“Elizabeth does have capacity to consent to those tests. I am a senior lecturer in medical ethics and law and since this study is to determine possible treatments for Elizabeth it is perfectly OK to carry them out.
I would have hoped that medical practitioners would have known that.”
—–Original Message—– From: susan bevis
To: ZB (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) Sent: Mon, 28 Mar 2022 19:05 Subject: Limbic system update
Hi Z
Are you trying to say that my daughter has no capacity?
Where is the study being done and who do I contact to get the necessary forms?
Elizabeth has agreed, witnessed by more than one family member.
I look forward to receiving the necessary forms. The tests are very important I am sure you will agree and this has already been agreed by Dr HMS in any case. His important research needs to be widely publicised and I have proof she has already agreed. The more people who know about his research the better as this could widely benefit more than my daughter.
The entire family are witnesses to this consent in any case.
From: ZB Sent: 28 March 2022 17:35 To: susan bevis Subject: Limbic system update
Afternoon susan
I have spoken with Dr HMS and the bloods that need to be taken for the Limbic system are not able to be Done as it’s as part of a study, and the study requirements stipulate that the patient must have capacity to consent to have those particular bloods taken.
All the doctor has to do is repeat the tests he did on the other patient. It was his research for god’s sake he should not need it explaining!
If it was not possible for a psychiatric patient to take part in a ‘study’ you might want to ask Z how Dr Shahpesandy managed to do the study on the 51 year old admitted with acute psychosis who turned out to have inflammation in the temporal zones cause by some problem in the Limbic system.
Upon admission he too had been put on Clopixol for his psychotic symptoms that were in fact a result of the inflammation in the brain.
It is hardly ‘responsible’ to ignore a possible cause or diagnosis. If physical symptoms are being ignored he needs to be reminded of clinical negligence and the case of Bolitho.
Subject: Anti-voltage-gated potassium channel complex antibody–mediated limbic encephalitis: a case report of a 53-year-old man admitted to intensive care psychiatric unit with psychotic mania
On further assessment, cognitive decline and severe short-term memory were noted; Addenbrooke’s Cognitive 55/100. CT, EEG and lumbar puncture were normal; however, MRI on 29 November 2017 demonstrated bilateral high signal around the temporal horn and diffusion abnormality, suggestive of encephalitis. Consequently, the patient was transferred to medical ward and zuclopenthixol decanoate was stopped.
I have been reading follow ups to Dr HMS’s interesting observations on damage to the limbic system. It is very strange that he acknowledges that inflammation or lesions in this part of the brain can and do cause psychiatric disorders but does not want to investigate this in Elizabeth’s case.
Since the psychotic episodes experienced by Elizabeth are characterised by anger and fear and clearly from the photographs there are comorbid endocrinal problems associated with her illness, damage to limbic structures could be responsible for both. It is of course possible that the endocrinal problems are caused by ADR’s to the drugs she is medicated with.
The limbic system is the part of the brain where emotions are controlled (or not as the case might be in psychosis) Emotional responses to stimuli are triggered in the Limbic Structures such as the hippocampus and the amygdala. Lesions or inflammation here would be likely to cause a marked and even severe display of exaggerated anger fear or both. Dr HMS commented on this in his joint paper on neuropsychiatry so it is not as though he is unaware of the research. An MRI scan would indicate this an it could be backed up by a serum antibody test for any type of antibody affecting inflammation or lesion healing in brain tissue.
In the severest form of PTSD or disorder of extreme stress, known as Selyes Generalised Adaptational Syndrome serious endocrinal and neurological symptoms are observed and the syndrome can cause permanent damage.
Researchers are examining the possibility of treatments directed at the limbic system for the treatment of acute anxiety disorders. The fact that new neurons are made in the limbic system indicates that stimulating such growth might offer a possible treatment for number of psychiatric disorders.
I am now going to suggest this as a research topic at my pharmacy school for the next academic years research students starting in October.
Dr HMS had an interesting case in 2017 when a man was admitted to the psychiatric intensive care unit. The patient presented, following almost a 2-month deterioration of his mental health with physically aggressive behaviour, elevated mood, paranoid-persecutory and grandiose delusions. Prior to his admission, he assaulted one of his neighbours. He presented with pressured speech and flights of ideas. He believed he had contact with politicians, including heads of states and powerful individuals. No cognitive deficit, no neurological symptoms.
After tests which included an MRI scan it was determined that the man did not have an underlying psychiatric disorder and that his psychosis was induced by encephalitis around the temporal horn. Further examination indicated the presence of anti-VGKC antibodies in the serum.
He had been treated with zuclopenthixol decanoate for the psychosis and on detection of the inflammatory condition in the temporal lobe area of the brain it was terminated. Inflammation in the temporal horn can cause disruption to the limbic system which can result in presentation of psychotic symptoms. Here are Dr HMS’ and his colleagues actual words used in the paper.
“Disruption of limbic structures has huge clinical implications and is presented with a variety of neuropsychiatric disorders including epilepsy, dementia, anxiety and mood disorders, schizophrenia as well as attention deficit and hyperactivity disorder”
I have encountered this before. A few years ago a woman presented with acute psychosis. The psychiatrist did not read he complete medical notes and proceeded to administer a range of neuroleptic medications. Had she read the notes she would have seen that the patient had undergone surgery on her thyroid and it was clear that damage to the parathyroid had occurred during this intervention.
Damage to the parathyroid is commonly associated with psychosis.
Dr HMS’ patient made a full recovery after the Clopixol was stopped and anti-inflammatory and anti-seizure medication was used to treat the encephalopathy and temporal lobe seizures.
The patient in the second case also fully recovered from the psychosis after the psychiatric medication was stopped and appropriate treatment for the endocrine (thyroid) disorder was prescribed
It always pays to investigate whether the psychosis is induced by lesions or infections especially of an inflammatory variety. Dr HMS went to great lengths to investigate his patients psychosis including EEG, CT and MRI scans as well as lumbar fluid.
Dr HMS has written research papers on neuropsychology that indicate he is positive about carrying out brain scans to detect lesions and or neurological causes of psychotic disorders. I just read one where he discovered that the patient had a limbic encephalitis and that it was that physical brain disorder that was causing the psychosis.
Therefore it seems odd that he would block Elizabeth from getting a scan since his research indicates he is in favour of carrying them out.
Safeguarding is what I believe being used against me by Ash Villa in conjunction with the Resource Centre of MH community services in order to restrict contact and to deny basic family rights and perhaps they do not wish to put any care in place in the community but I am only assuming this at this stage. I have decided to defend myself against bullying by certain (not all) professionals.
I attended St Mary’s Church Wilsford yesterday for a wonderful service and the vicar there has tried to make contact with Elizabeth who says she would like to see someone from the church. Many people are oblivious what is going on under mental health “care” in the UK which needs to be open and transparent.
Today I have established it is LINCOLNSHIRE PARTNERSHIP TRUST MENTAL HEALTH SERVICES rather than social services I will be dealing with. Their Resource Centre is based in Stamford Lincs.
I am still the Nearest Relative and so have called for a Manager’s Hearing:
As Nearest Relative for EB I would like to call a Hospital Manager’s Hearing as soon as possible.
Please inform everyone above of the date of this Manager’s Hearing.
Thank you.
Kind regards
Susan A Bevis
The Tribunal was cancelled because apparently a care coordinator could not be present for whatever reason as Nearest Relative they are cutting me out of everything in terms of information and I am finding out through other sources.
I contacted the Mental Health Act Office for Ash Villa last week asking for the names of the Associate Hospital Managers. I was advised that there are no set managers. Associate Hospital Managers are supposed to be independent but my enquiries led to nothing when I tried to find out who was actually in charge of this hospital and this can only be achieved by way of calling a Manager’s Hearing.
Here are my daughter’s messages today:
“I think I am being abused at Ash Villa”
“Listen to me I am at breaking point”
There is much that can be improved at this facility and I believe staff would like to see such improvements. I do feel though that they to be educated in terms of mental health law plus human rights law and could benefit from the Oliver McGowan Training Programme.
On mentioning about this being the most restrictive facility ever encountered that takes over an hour to get to this was defended by a member of staff saying it was the MHA and they were complying with this or words to this effect. At Ash Villa there is only one hour a day allowed and this consists of two half hourly sessions. In order to comply with such rigid restrictions Elizabeth had to go inside the ward for 5 minutes before being allowed out again. It is surely supposed to be the least restrictive practise required and that it should not be forgotten about human rights ie Article 8 and Article 3. It is degrading treatment to be treated like a criminal and not just for the patient but carer/relative and staff think this is right and in line with the MHA.
Ash Villa’s Charter is all about:
“Respect” “no judging” “safe place to have your say” “listen to others” – What can I say to this other that lol!
There is plenty of judging in a detrimental way towards others. There is no listening or having a safe place to have your say other than supervised visits to listen and report to the top and as for safe place to have your say when an advocate appears on video link then NO MEMBERS OF NURSING STAFF SHOULD BE PRESENT AS THIS IS A CONFIDENTIAL MEETING BETWEEN PATIENT AND ADVOCATE.
“Working and Learning together”: I can only see Working against when there are more and more and more “professionals” attending meetings and so where is the learning together when carers and patients are disregarded and if you dare to criticise then moves are made to displace you as the Nearest Relative. There is zero tolerance for any criticism and this also applies to the carers network who are supposed to support you.
“Recovery Choice Opportunity Hope”: The longer the incarceration the less hope and how long does it take Lincolnshire Partnership Trust to release someone back home in accordance with THEIR wishes not that of Lincolnshire Partnership Trust who were at one point signposting care homes when this had been tried before and the most apalling schemes in breach of health and safety were provided. It is the MH Resource Centre surely responsible for this?Could it be that the MH Resource Centre is holding up the release of Elizabeth from Section 3 after all this time?
Sharing Your Story: Yes this is important as otherwise nothing will EVER GET BETTER.
My enquiries and investigation into my own investigation as the Nearest Relative POA have led me to not social services as I thought but LINCOLNSHIRE PARTNERSHIP TRUST MENTAL HEALTH SERVICES – I am not altogether surprised as we had apalling experience from the previous mental health resources team in Enfield.
Now I know who I am dealing with but I am still the Nearest Relative who has not refused to delegate my role but I do not like the way I am being bullied into this and no way does my vulnerable daughter understand the full and important role of the Nearest Relative which no doubt has not been explained to her and she would never have instigated a conversation with regard to getting rid of me as Nearest Relative UNLESS possibly prompted, coerced or gaslighted OR simply misled. Someone must have mentioned to her about the Nearest Relative.
I have delegated my role once before back in 2017 when taken to the Royal Courts of Justice and representing myself to the point that Enfield Council’s legal department tried to charge me £5000 of costs which forced me out of the proceedings but I delegated my role. Just imagine what this money could have gone towards in the local community.
My point is that taxpayer’s money is being wasted. Instead of working together with the Nearest Relative AMHPS choose expensive legal action to get rid of them and divide the family and this is very destructive on their part. This is why the MHA needs to be amended. It is a conflict of interest for any social worker to be the Nearest Relative.
The Department I am dealing with right now is STAMFORD RESOURCE CENTRE
I dont know whether it is this department who is also trying to get rid of myself and her father as Power of Attorney because someone has made malicious comments – could be anyone from ward or mental health services and in any case if that is so then this will be brought before the Court of Protection and all will be revealed at enormous cost. Last time CoP were wonderful and the community MH Team social workers were slated.
They are not thinking of what is best interest in terms of health and welfare by holding Elizabeth on a locked ward that is noisy and moving her from room to room, depriving her of fresh air and contact with her family with false accusations levied towards myself/her father of stopping the depot or encouraging her to do so which is the malicious allegations put forward to Public Guardianship Office to get rid of us as attorneys for health and welfare.
The one thing I have done though is to challenge them on physical health which I feel they are neglecting as the former area of Enfield were finally taking this very seriously whereas Lincolnshire Partnership Trust have refused permission for me to take Elizabeth to see the Neurologist in London and other appointments which the local GP surgery advised was best to do. They have not granted any Section 17 leave so this is a form of punishment and abuse of human rights.
For the information of anyone who has a relative stuck under MH services right now Section 17 leave IS NOT GROUND LEAVE FOR HALF AN HOUR TWICE DAILY. No Section 17 leave is granted to Elizabeth by the RC of Ash Villa.
SECTION 26 MHA – reason why restricted contact with your relative? As regards possible safeguarding I have already said I would welcome this under a Section 42 meeting. So what is this safeguarding exactly about Lincolnshire Partnership Trust as I would rather be judged by the public as everything under Lincolnshire Partnership Trust seems biased. Openness, honesty and transparency would surely come under your Charter “connecting with others and your community” – this is of public interest as litigation costs public money – money that is better spent on improving care and facilities for those in need. I can overwhelming prove my innocence against what I am being accused of currently before the Public Guardianship Office – Anita Heera Investigator and I do not mind making this public.
At Ash Villa there is potential to improve everything. They have nice grounds for a start. They have a netball court and they used to have gardening in the grounds. There is enough space for a swimming pool and there ought to be a hairdressers and beauty salon – again there is enough space for this. Rooms should ideally have en-suite shower rooms. There should be a minibus not just taking patients to appointments but on days out like the Out and About Club at Lincoln Hospital.
If the public think that these patients are dangerous they are very much misinformed. I would welcome any of them to my house. These are people who have suffered tremendous abuse but have never been given the right care or facility. A locked facility is not the right one for recovery especially somewhere where there are restrictions bordering on prison and where bullying tactics/abuse of human rights are evident.
I’ve had quite a nice day today starting with a church service for Mother’s Day at St Mary’s Church Wilsford. It was a really nice service the only sad thing was that Elizabeth was not allowed to come with me. I have still not been given a reason and as Nearest Relative I should have been given a reason for the restrictive care under S26 MHA. The church service was specially for Mothers Day and references were made specifically to Mother’s relationship with their sons/daughters.
Anyway the history of St Mary’s Church is quite fascinating and I passed on to Elizabeth details of the service and Elizabeth confirmed in front of two members of staff that she would like a visit because after all religious rights and access to services is ignored under Lincolnshire Partnership Trust who provide the most restrictive “care” every encountered. They would come top if there was a prize for this.
After the service I went swimming and then onto Ash Villa and leave was booked outside as there is Covid restrictions on visiting yet again.
I always take nice things that are healthy for Elizabeth and then leave her with some money.
I am very concerned at the restrictive visiting and lack of exercise and fresh air but today was a nice day and we went outside and sat on a bench. Elizabeth complained about her eyes that she could not see well and complained about pain to her hands. Elizabeth said her Advocate from Voiceability was on a video link but what was a member of staff doing there at such meeting. Surely a virtual meeting with Elizabeth should have been one to one and not include any staff member.
Elizabeth asked after her cat and wishes to come home – at least the RC is not in dispute of this as they kept asking her the same questions time and time again about where she wanted to live.
It is getting nicer weather now and I am concerned that Elizabeth is not exercising or having hardly any fresh air. I do not know how long this institution keeps people but it is not good at all as Elizabeth stays in her room for the most part and is in bed as she feels cold. If she was home she could be in the static caravan or in a comfortable room of her choice with ensuite whilst her separate living accommodation is being built.
After just half an hour staff called Elizabeth to go in. However I explained that last weekend she had one hour which is all her entitlement. Staff accommodated this and seemed to appreciate that I have a long journey to make and it is over an hour away from home. This time I reflected upon last week when staff called her in for 5 minutes before letting her come out in the sunshine for the rest of her leave entitlement.
I get the feeling that they are very short staffed on the ward – some days Elizabeth does not go out at all.
Through lack of exercise she has gained weight and she looked pale and unwell. There is something wrong with her breathing that was commented upon by the former area care coordinator.
I have no idea what stage safeguarding is at against me but no doubt there is some kind of plan as there have been ever increasing numbers of professionals invited to ward rounds and I do not get to hear what is really going on other than through Elizabeth herself.
Tomorrow is Mother’s day but for me it will be a very sad occasion as I have no rights to see my daughter under Ash Villa, the only hospital that has ever resorted to this restrictive practice.
I will make my usual journey to visit my daughter over an hour away but am currently being treated like a criminal and not allowed to spend any time with her any more and under safeguarding and investigation as an Attorney. Because I have nothing to hide I will share with you all my experience of Lincolnshire Partnership Trust.
I was advised at the most recent Ward Round that concerns have been expressed about me but the RC would not emphasise further. Like I say I have absolutely nothing to hide.
I am currently under investigation via safeguarding. Furthermore both myself and her father are under investigation as Power of Attorney for Health and Welfare.
I have just heard from my daughter. She is in bed and has not been out for fresh air at all today. It is heart-breaking that on this beautiful sunny day my daughter is on a locked ward and this should never ever have happened if only the NHS had cared and assisted rather than bullied us.
I am just trying my best to continue with life such as it is. We left Enfield because we were bullied and treated apallingly, life barely worth living. We came to Lincolnshire hoping for a fresh start in what we thought was the correct environment.
I dont know how it works in terms of S117 aftercare but Elizabeth wanted to come away because she was unhappy in Enfield and going downhill. She was just lying in bed all day and I was going round every day to help in the absence of not a scrap of care provided, the team involved were ENFIELD COMMUNITY REHAB now we have a similar situation but on a locked ward which sadly was planned by the former area and none of these locked wards have been the right environment for her.
The fortnightly depot was being titrated down by 50mg every six weeks and was the only care in place. There was nothing to do, no support. There seemed to be no care coordinator. There was once going to be a Judicial Review and then she was unlawfully sectioned yet again.
We have now moved to Lincolnshire and to a very nice part of Lincolnshire by the coast. I bought a house that had potential to build a separate living accommodation in a safe environment but sadly it has been a disaster.
For Mother’s Day I would have liked to take Elizabeth to church, to see the ducks on the canal, for a meal out, swimming but none of this will be allowed which we see this as punishment. This has been ongoing now for some time and no reason given.
Under Section 26 of the MHA I have received no reason for these restrictions but the RC of Ash Villa mentioned that concerns had been raised about me but would not say by whom. He also commented about me being polite to staff so it could be staff reporting me because I had phoned the ward asking for her phone to be handed back that is often kept in a locker. There is nothing more distressful as a parent not being able to get through on the phone to your son or daughter especially when you have very restrictive visiting rights The ward phone is often ringing for a long time and then it cuts off but I would not choose to phone the office number if I could get through to her phone.
Once again we find ourselves in a never-ending vicious circle of court/tribunals and displacement by professionals who know nothing about us as a family and who we are not stopping from seeing Elizabeth in the community but it is as though they do not want her to be released. Once nurse said she spends much of her time in her room keeping herself to herself and that is because she cannot stand noise. I am also concerned she is not getting enough fresh air and exercise.
All that was needed was a continuation of care in the community that the NHS failed to provide in Lincolnshire and now myself/Elizabeth’s father are under investigation by the Public Guardian Office as a result of malicious reporting by those who are accusing us of preventing Elizabeth/or discouraging her from taking Clopixol Depot injections which I had tried to get in place and for which I have proof. I have nothing to hide and so I am making this public.
Ash Vill Sleaford
“Ash Villa, a new adult acute treatment ward in Greylees near Sleaford will officially open on Monday 1 March 2021.
The 15-bed acute treatment ward will provide support for women who are experiencing a severe, short term episode of mental ill health and who cannot be safely supported by community based services.
The unit, managed by Lincolnshire Partnership NHS Foundation Trust (LPFT) will help to reduce the number of patients having to travel outside of Lincolnshire for hospital care.
LPFT Director of Operations, Chris Higgins, said: “We are delighted to be opening a new mental health ward specifically for women. We have wanted to stop patients from having to travel further away from home for acute care for some time and coronavirus has magnified this challenge.
“Over the last two years we have had more females admitted to acute inpatient services than males and these additional beds will allow us flexibility across our entire adult acute inpatient services.”
The new ward will complement existing adult acute mental health wards in Boston and Lincoln, where patients will receive their initial assessment. Following a thorough initial assessment of people’s needs at these other two units, where it is appropriate, female patients can then be transferred to the treatment ward at Ash Villa to receive their on-going support before discharge.
“The opening of Ash Villa will provide a great resource for Lincolnshire, helping to provide invaluable mental health support for women in county. It will bring extra flexibility and help us to reduce the number of Lincolnshire women who have to travel out of county for the care they need,” added Andy Rix, Chief Operating Officer South Locality, NHS Lincolnshire Clinical Commissioning Group.“
Having continually attempted to get the depot continued in the community upon moving, Elizabeth was left without the drug for six days. I was advised to register her with the GP which I did and to call 111 then take her to A&E. Unfortunately instead of help she was taken away and sectioned to Lincoln Hospital where there were draconian restrictive visiting rights with members of staff standing over you at all times. Unfortunately all that was needed was the continuation of care but they got hold of past file records full of inaccuracy and lies from the former area of Enfield and these were used in Tribunal papers where Elizabeth failed to get off S2 then there was an attempt to displace me as Nearest Relative at County Court brought about by various social workers and assumption I would disagree to S3 because I was not happy with the Section 2 as all I tried to do was to get the “care” up and running and this is what the Public Guardianship Office is currently investigating us for that we deprived such treatment (a depot) to Elizabeth or encouraged her to stop taking it when we also notified the former area that we were moving and obtained a letter detailing the reductions in hand and gave that and the discharge note pointing to only physical health conditions to the new area where we had registered with Marisco Medical Practice in Mablethorpe.
Since moving we have made substantial improvements to the family home to accommodate Elizabeth in her very own independent flat in the back garden which overlooks the sea. This is without doubt the right environment not a locked ward.
We had her home at Xmas but just for a few days which was a success but then we had to take her back and she became unsettled which put back her release. I had hoped that Elizabeth would have been released in February but she is still at Ash Villa and her Tribunal has just been postponed because a care coordinator could not attend.
Since Xmas, and her Birthday in particular visiting rights have been restricted to the point it is as though we are being treated like criminals.
This is beyond doubt the most restrictive and ruthless “care” ever encountered compared to everywhere else Elizabeth has been. Even Cygnet, Huntercombe and Cambian did not compare to this. It is like prison because that is what you would expect from a prison not a hosplital that is supposed to care and help people get better.
“it is evil to stop her from seeing her mother on her Birthday”
“I urge you to complain”
Elizabeth’s comments (she claims to be autistic but noone listens or cares)
“I will never get better in here”
“Hi someone has stood in my way getting home”
“Csny wait come home”
“All that I’ve seen happen to me is my liberty being taken away its starting to become really boring this GAME!”
“I love you mum you’re the best”
“ I am currently stuck in Ash villa“
“Hi mum isn’t there a way I could stay in the chalet while your busy building”
“You’ve got to get me outta hrre”
“I love pigeons and make sure they’re some onion rings crisps and sandwiches from ms”
“Hi I think the MH health has abused me”
“Hi Mum can you bring me a homemade choc cream filled cake – Hi can you please get me some egg mayonnaise sandwich maker sliced white bread olive oil spread some more salami.
“Are you coming to see me.”
“Are you going coming to see me tomorrow.”
“It will be a long old stretch till end of February but I hope ur ready pick me up and well go for a nice mcdonalds meal and I will give you my coke so I dont spill it.”
“Dr R I think is behind all the abuse I could cry.”
“They are being nasty I dare you to come to the hospital and demand my release.”
“make sure you send that ombudsman paper off to the right place”
“miss you lots”
Re her cat “how’s my baby fluffy “I am glad he’s ok I miss him I wd love come see him sometime soon”
“ I cant wait for my chocolate birthday cake sounds del”
“could it be that the autism has caused me to look unwell”
“this situation MH gets weirder as the day goes past. They are ob trying to hold me against my will here it’s so terrible”
My daughter has herself on two occasions on her own accord called the CQC but now things have taken a turn for the worse and I am having to look for all the capacity assessments she has had carried out in the past which are many. My daughter has also put a prayer on Lincoln Cathedral’s website begging to come home whilst at Lincoln Hospital. I had nothing to do with this whatsoever and she could not have done this if she did not have capacity.
I received a letter dated 10 February 2022 informing me that the Tribunal for Elizabeth would be held on 22 March 2022 at 14.15 By Video. “We are contacting you as the patient has indicated they are happy for you to be kept informed of their Tribunal appeal. However access to the actual hearing is not automatic and our Tribunal panel need to be satisfied that your participation is appropriate. The final decision will be with the Tribunal panel sitting on the case on the day of the hearing.
I had filled out the forms attached but heard nothing more. Yesterday I contacted the Court and Tribunal Services and I explained I was the Nearest Relative for my daughter and that she wanted me to attend.
Today I again wrote and telephoned the Courts and Tribunal Office and despite my efforts I was not admitted into the Hearing.
I know full well if I had been allowed in I would not be able to write about the Hearing as this would be seen as Contempt of Court but the institution where my daughter is right now has a Mental Health Act Office and neither ST or SJ Manager bothered to even ring me back. Now I have just found out that Elizabeth did not go in but was ready to. She was not asleep. She did not get the chance to go in WHY WAS THAT???? What kind of justice can be gained by a court Hearing going on behind your back and the person who this is all about? What was the decision taken in the absence of myself as Nearest Relative and my daughter who was ready to attend but no-one got back to her. Seriously there needs to be an investigation into all of this. This is public money.
Professionals at Ash Villa Sleaford have been instructed not to speak to me, to put the phone down on me and call the Police if they see fit. This is the most restrictive place my daughter has ever been in and human rights breached but surely this should be the least restrictive. Having said all this I cannot criticise all members of staff there. Some are quite nice and are only doing their job but the orders seem to come from the very top “it is evil to keep her from her mother on her Birthday”. “I urge you to complain”.
The Courts and Tribunal Services are secret courts funded by public money and there should be openness, transparency and accountability. What excuse was given as to why Elizabeth did not go in?
I think I know what the outcome will be of the Tribunal will be in light of this. It most certainly would not be fair. Because such courts are shrouded in secrecy and likewise all public body complaints systems are biased in favour of “professionals” I am afraid there is NO JUSTICE in the UK and never will be and the voices of vulnerable people will not be listened to.
The idea is to distance a vulnerable person from their families, to incarcerate them in unsuitable noisy institutions or care homes put under a DoLs or CTO. This vulnerable person (Elizabeth) said that she would like her mother to attend the Tribunal otherwise I would not have got the letter in the first place and this was also confirmed on Sunday last when I visited my daughter she again said she would like me to attend.
Every week without fail I drive an hour’s journey in the new area to this facility just for 30 minutes then another 30 minutes in total as No S17 leave given. It is the most restrictive “prison” facility ever and all she did was to throw some tea – all this time imprisoned when she could be home and out in the sunshine. Elizabeth is on a fortnightly depot and I was advised by an expert who I turned to for advice that on no account should I ignore the fact that she was on the depot and should phone 111 which I did which led to A&E then sectioning which was not the intention then a catalogue of bullying even worse than we have ever known before in the new area where we had hoped to start afresh and hoped that things would be different. The last thing I wanted to do was complain or write my blog. All that should have been done was to continue the treatment in place already and the reduction of the clopixol depot ongoing as was being done before by professionals. However, I have just found out that the previous area still have the S117 care and perhaps this has caused the problem as they refuse to release it.
When Elizabeth was discharged from Chase Farm hospital Enfield, North London she had a discharge note that pointed only to physical health conditions re abnormal findings on a scan. There were lots of different medical appointments I was having to take Elizabeth to. They were finally taking her physical health seriously. To get her to these appointments was difficult as someone had damaged my car through theft stealing the catalytic converter and leaving me without a car so I had to hire a wheelchair. I would take Elizabeth to all these appointments which was incredibly stressful for her. The one outstanding appointment – most important of all was the Neurologist appointment. When I sold my house I tried to get this moved forward in vain but since then have been unable to take her despite the new GP stating to go back to London and I was prepared to drive there. This has been refused by doctors at Ash Villa when there are abnormalities on a scan and I am prepared to pay.
When we moved, following a meeting with Enfield Community Rehab Team, we obtained a letter in addition to the discharge note. The note was detailing the reduction of the depot injection by the RC Dr Ilyas Mirza. The details therein did not quite match the verbal account given which was every six weeks a review would be given. Elizabeth was on no CTO and every six weeks was being reduced off the drug clopixol depot by 50mg and he commented that on the very low dosage he would have to be more careful and this would require more frequent contact so the depot was like a section in itself. Every time they came she was upset and thereafter too it would take her a few days to recover. All the time I stayed with her, held her hand and watched her distress and someone else witnessed what was going on but not once did she refuse. Not once did I stand in the way of such treatment but I totally understood how she felt.
At Chase Farm Hospital Enfield she was dragged across the floor, had her handbag ripped off her shoulders and was kicked in the knee in retaliation by the ward manager when she tried to defend herself in vain. At Elysium also brutal treatment and drugged to max level.
All along she has maintained she is autistic. My daughter came out positive in all screenings for autism and I have watched professionals and the way they communicate with her not having a clue and this is why I would welcome every Trust being involved in the Oliver McGowan Training Programme which is supposed to be mandatory especially Barnet Enfield & Haringey MH Trust and Lincolnshire Partnership Trust.
Prior to the Tribunal I tried to ring Elizabeth. I could not get through on the phone. It turns out the phone was in a locker placed in there by staff – my only point of contact, a carers rep told me Elizabeth did not want her phone from the locker. Why was the phone placed in the locker and why are visits restricted as I am the Nearest Relative? Why was I excluded from today’s Tribunal? Why is my daughter’s wishes not listened to? Why most importantly was Elizabeth deprived of going into the Tribunal today? Why are members of staff instructed to put the phone down? Who reported me as an unfit attorney when I tried to get treatment continued in a new area and why is the S117 aftercare still with the previous area?
I have an extract to reveal from a letter signed by Sarah Connery Chief Executive: “we are doing all we can to ensure she is receive a high quality service from LPLFT whilst in our care. We acknowledge this is a very difficult time for you and therefore *** Carer Champion for Ash Villa will continue to support you. Also it goes on to say her role is to support me as carer not to answer questions on behalf of others. When you are banned from speaking to anyone what kind of service is this? – sadly so much for wanting a fresh start our move has been disastrous and horrific and we have encountered even more restrictive practices and draconian treatment ever witnessed before. There is no accountability when it comes to mental health/autism and LD and this area is a prime example coupled with my previous area.
In this new area there is a big carers network none of which is supportive – there is a whatsapp group with hundreds of carers included. When I wrote recently stating that no-one bothered to tell me that my daughter had contracted covid and was in isolation – this was their response: “this is a polite request to everyone when posting messages to be mindful what is posted on here so is inclusive to all and we support each other and maybe a different forum is needed for other issues.” In other words it is not supportive to anyone who needs real support. It is only for those who post positively. There is no way I could work paid to shield professionals like a barrier where you might if you are lucky get snippets of information here and there but many questions remain unanswered. When you complain to Pals nothing comes of it then you get a letter from the Chief Executive as mentioned earlier.
I have never seen such restrictive treatment in breach of human rights anywhere before and that is why I call it prison. As a carers rep myself I feel there needs to be substantial changes otherwise nothing will ever get better. I am not saying that all staff are bad but there is most certainly breach of human rights by depriving contact and proper S17 leave not escorted. We have had several days of no contact at all following her Birthday. Elizabeth is not happy and wants to go home and the house is now much better. I feel like putting up all the pictures on Youtube detailing the extensive work and building of Elizabeth’s very own independent accommodation.
Even Cygnet, Cambian and Huntercombe were less restrictive but what makes this all the more horrific is that this is an NHS Hospital in breach of their very own Charter. I would also point out that patients religious needs are not catered for and that it has been refused on two occasions that Elizabeth is allowed to come to church. I had to advise the local churches today about this fact.
I want to point out also that I have spoken to more than one member of staff to ask how Elizabeth has been lately. I was told she is spending most of her time in her room alone. She has not been in any kind of trouble. She cannot stand the noise and I bought her ear plugs as noise is distressing to her. She is lying in bed when it is nice outside and up during the night. She is also feeling cold and complains that the bed is uncomfortable. She is being given extra prn drugs on top of the clopixol depot. She has commented she will never get better in there and that is not surprising.
I have just asked Elizabeth how her tribunal went. She is commenting on her cat.
Elizabeth said she did not get the chance to go in. She is writing to me right now. I wonder why???
I am trying to clarify this but there is noone to turn to for any answers.
“All that I’ve seen happen to me is my liberty being taken away its starting to become really boring this GAME!”
“I love you mum you’re the best”
“ I am currently stuck in AV“
“Hi mum isn’t there a way I could stay in the chalet while your busy building”
“You’ve got to get me outta hrre”
“I love pigeons and make sure they’re some onion rings crisps and sandwiches from ms”
“Hi I think the MH health has abused me”
“Hi Mum can you bring me a homemade choc cream filled cake – Hi can you please get me some egg mayonnaise sandwich maker sliced white bread olive oil spread some more salami.
“Are you coming to see me.”
“Are you going coming to see me tomorrow.”
“It will be a long old stretch till end of February but I hope ur ready pick me up and well go for a nice mcdonalds meal and I will give you my coke so I dont spill it.”
“Dr R I think is behind all the abuse I could cry.”
“They are being nasty I dare you to come to the hospital and demand my release.”
“make sure you send that ombudsman paper off to the right place”
“miss you lots”
Re her cat “how’s my baby fluffy “I am glad he’s ok I miss him I wd love come see him sometime soon”
“ I cant wait for my chocolate birthday cake sounds del”
“could it be that the autism has caused me to look unwell”
“this situation MH gets weirder as the day goes past. They are ob trying to hold me against my will here it’s so terrible”
My daughter has herself on two occasions on her own accord called the CQC but now things have taken a turn for the worse and I am having to look for all the capacity assessments she has had carried out in the past which are many. My daughter has also put a prayer on Lincoln Cathedral’s website begging to come home whilst at Lincoln Hospital. I had nothing to do with this whatsoever and she could not have done this if she did not have capacity.
J…. she asked about your phone calls.
Have you got a copy of your care plan “no”
“would like to come to church”
“you nd to act now call cqc”
“I refused the lying down mri”
“bring my swimming costume just in case”
“I think I am being abused”
I have just spent over an hour driving to visit Elizabeth. It has been a nice day today and only ground leave is allowed because there is covid on the ward again. You have to book a visit even for when it is to walk outside. I saw other patients outside on their own but doubt whether Elizabeth is allowed out without escorts. I have supervised visits only and that has been the case for quite some time. When asked why? you get no answers to this. When asked about S17 leave again you get no answers.
I am just about getting used to the roads now. I found them terrifying at first. It is hardly worth me going to visit for just one hour but I always make the effort and combine my visit with other things such as going to the local church where I have met some very nice people and swimming. I asked a week ago if I could take Elizabeth to church. The answer was no. I asked if I could take her swimming. The answer was no. I asked if she could see the lovely ducks and pigeons in the canal – the answer was no.
I have one point of contact only and staff have been advised to put the phone down on me. If I was to do this in my previous role I would be sacked but this is the NHS and anything goes.
None of this should ever have happened but this area is a prime example for other areas to learn from.
I am included in the ward rounds so far and presented a list of questions prior but not all were addressed.
One such question was “Why under S26 of the MHA have I as NR been given only restrictive visiting rights?
Another question was “who are the hospital managers” – “we can’t give you this information”.
It is heart-breaking that on a nice day such as today Elizabeth is held a prisoner and spends most of her time in her room. She should be out in the fresh air or more to the point home amongst her family.
I have done a lot now to a house that was sadly neglected for many years. I might put everything up on Youtube to show what I have had done to the house.
Elizabeth liked the house even when it had not even been touched and she liked the area where people are kind and friendly however not everyone is kind as we have found out.
The question needs to be asked why care was not up and running – care being the depot injection in the community which Elizabeth was being taken off.
I tried hard to get ongoing “treatment” in place knowing full well that I would be labelled as unsuitable and unworthy of being the Nearest Relative but even worse is their approach in this new area. The S117 aftercare of depot only was still being held by Enfield Community Rehab Team just after Xmas and I am assuming they still have this because Elizabeth flatly refused to speak to them.
If you are thinking of moving to a new area in the hope of a fresh start and new beginning I am afraid my blog is a warning to everyone who thinks things are better elsewhere when they are not.
Today’s visit was quite pleasant and this time staff stood back. It was outside in the grounds and I was able to hand Elizabeth all the nice food and money etc that I brought for her.
In the previous hospital about half an hour away from this one I hardly had any contact and again it was supervised which was intrusive and quite frankly degrading. Even more degrading was the caged vehicle used to transfer patients – they are patients not criminals so why can’t more suitable transport be used?
There is no thought for Art 8 or 3 in this area. Family visiting rights severely restricted and blame put on covid. At the previous hospital it was dormitory accommodation and this is highly unsuitable for someone like Elizabeth who has sensory issues and still persists in saying she is autistic but noone listens or respects – the very diagnosis was autism. It is as though they do not want her to have the autism diagnosis and that they just want to stick with schizophrenia because this is what they can “treat” with drugs. They had to put her in a side room at the other hospital but the current facility is situated in a quiet area.
So Elizabeth spends much of her time in her room and in bed she said to keep warm. Apparently blankets are not allowed and I was taking a little dog to visit which she thoroughly enjoyed but was told this was not allowed. This place quite frankly is more like prison than a hospital. Physical health is overlooked and dismissed.
My next blog will feature the various letters I have received which I am sure some of you can identify with. I will try and do this tomorrow.
On a positive note the house is much improved now. We have a static caravan which I bought especially for Elizabeth as I did not want to prolong her suffering whilst being held like a prisoner simply because the NHS could not get things up and running in the new area. Hopefully work can start to take place on the demolishing of rundown garage and the commencement of building works for her separate architecturally-designed living accommodation for which we have consents. I got the static caravan for Elizabeth and she will be overjoyed to see this.
I was concerned today that Elizabeth was subdued she told me that a nurse had injected her with a different drug and she was very very weak and tired. She is not getting fresh air or much exercise. The grounds surrounding this facility could be made much nicer and I asked staff members what they would like to see. I shall feature this in another blog as I can also think of no end of improvements to this facility.
It is a pity that the RC Dr HMS has resorted to getting rid of me as NR and going down the route I believe of discrediting the POA for myself/her father. When he told me this at ward round I thought “not again!” How many times do I have to be bullied and faced with legal action against me like a criminal and most importantly how much is this costing when this money could be instead spent on better things and I would be willing to help raise some money instead plans are already in hand to get rid of me and in a very big way which I am more than happy to feature despite my comments below:
I have been warned if I wrote about this that the consequences were that they could discredit me and trying to say that I am mentally ill when in fact I would not be driving for hours or writing this accurate blog otherwise.
I had so hoped for something better and I am awaiting my FOI request as to how much this facility costs and will let you all know.
The Tribunal is on Tuesday and I do not appear to be listed as NR yet I most certainly am the NR and Elizabeth today confirmed her request for me to attend.
I have not written a blog for a while because we moved back in September and I have been busy settling in and there had been no end of problems as I purchased a house needing a lot of work doing but with seven bedrooms and scope to make this house look very nice. What attracted me to the house was that it is in a beautiful area surrounded by nature and the sea is within walking distance with access from our garden. It is so different to London.
The first thing I noticed was that people are very nice and everyone said “good morning” etc unlike in London where you could go all day without speaking to anyone.
My quality of life improved during lockdown unlike so many and this period made me think closely about my life and especially thinking of Elizabeth who had been discharged from a year’s incarceration at various hospitals and thanks to NAS and Access and the CTR it was decided that Elizabeth could go home in accordance with her wishes.
Elizabeth was discharged without any CTO because it was felt that this was wrong for her. A CTO had been tried in the past and used to threaten and bully her into engaging with a team, namely Enfield Community Rehab who never put any care in place or support. They said no one could work with Elizabeth but that was not true. I found at least three people who could and this enabled me to go to Gibraltar for a family wedding.
The selling of my house took time and it was a stressful period as I had had enough of London and especially after Xmas when Elizabeth was not allowed out all of a sudden and that was despite permission from the RC. I will never forget that awful day when I served Xmas dinner to Elizabeth in the car. A very degrading experience and they were moving patients to other wards on Xmas Day without any thought of family and apparently a bed had been found in Darlington so I turned up just in time.
I finally sold the house but Elizabeth was in a flat and had come out of a year’s detention very disabled.
I was still so happy that she was allowed to go home but I was the only source of care in her flat and she had been discharged to the point she could hardly walk.
On the Discharge note was mentioned only physical health conditions and twice was mentioned “abnormal findings on a scan pointing to CNS”. This was the first time I had seen such Discharge Note pointing to only physical health. I tried to find out what CNS condition Elizabeth had. It was evident that her breathing was very bad and this was commented on by her care coordinator. Finally the local area GP was taking her health very seriously. There was appointment after appointment. They were checking on everything including ECG but the one important appointment that was recommended ie Neurologist had a waiting list. This appointment was the most important of all bearing in mind the abnormal findings but sadly I could not bring this forward and this coincided with our date of moving.
The day before we moved we had a meeting with the Community Rehab Team whose manager is Lucy Omezi and Dr Mirza was present.
We discussed the fact that we were moving and would need a letter to explain to the new team what treatment Elizabeth was having which was Clopixol Depot and this was being reduced down to nothing. Dr Mirza visited Elizabeth in her flat and said that every six weeks he would do a review. Following the review Elizabeth was reduced by 50mg every six weeks. She was on the maximum dosage of 400mg and was complaining of side effects so when we moved Elizabeth was on 300mg and due a reduction of 250mg. With this letter I did not think there would be any problem. The Manager of ECRHT suggested one week’s trial which is hardly enough but what could I say because Elizabeth had not seen the new house or area we moved to.
We had to take her with us because Elizabeth could no longer manage in her flat and had come out of one year’s incarceration very disabled and there was no support in that flat.
We were so happy to see the back of Enfield where we had become increasingly unhappy and all we wanted was for a fresh start in the new area.
I have not written a blog for a long time as I have been concentrating on my forthcoming book but recent events have led me to write the above blog which I will be adding to.
When you reach the end of a complaint which has gone nowhere you get labelled:
I have featured the response I have received from those at the top of the Trust. Before you even contact the Ombudsman you must have exhausted all avenues of complaint and this speaks for itself.
Elizabeth was discharged from Chase Farm Hospital on the 28 May and was discharged without a Discharge Note or care plan in place to my knowledge. The Discharge Note detailed only physical health concerns.
I was pleased that she had been discharged from Chase Farm Hospital and became a full time carer as once again the Community MH team had failed to support in any way apart from administering a depot which made Elizabeth suffer so much before and after administering because she had developed a fear of needles.
So the depot was being reduced and titrated down to nothing and every six weeks a review was given.
The complaint with the PHSO to address the brutal treatment of my daughter under NHS care was largely on hold because of Covid and had been for some time. Suddenly an “investigator” contacted me under Ref C-2006177. Caseworker LM responded stating in his email dated 25 June 2021 that the discharge note had been added to the case file “we have everything we need from you at this stage”. “As previously advised, please note that in order to consider your complaint further we would need to see evidence your complaint has been fully investigated by the Trust and all points raised have been addressed”.
I think I gave more than enough evidence that things had not been fully investigated and how could they possibly have been when this went right to the very top and noone responded to the complaint despite Teams Meeting with Pals and Chief Nurse nothing was resolved because my complaint involved letters I had received as well as disturbing things that had happened to Elizabeth on the ward. Nothing was dealt with once again.
“If you have any questions please contact us quoting your unique reference number that has been assigned to you ie C-2006177.”
When you are labelled a vexatious complainant who can you turn to especially if those named such as Pals and a manager of social services do not respond? Was it justified that those at the very top of the Trust wrote such a letter accusing me in the way they did and was it justified that no response was given to the MP from the very top of the Trust. This has all been done before but this time the PHSO were not so dismissive.
Anyway a new case worker was appointed namely ZH. She has sent various correspondence and refused to send a written response to explain why the complaint had been disregarded. However she pointed me in the direction of the Local Government Ombudsman and the Police. This is just passing the buck and dismissing a year of the most disturbing abuse to my vulnerable daughter under NHS care. It is integrated care in Enfield so why not involve LG Ombudsman jointly? Instead I was told the complaint was nothing to do with them but the LG Ombudsman so I have today contacted the LG Ombudsman and I believe Nigel Ellis is the CEO. I printed off a form and completed it with my new address on. Yes, I have moved away from London where I have lived all my life because it became so unbearable.
Here are just some of the extracts from my complaint in an email sent to previous investigator LM:
Every complaint avenue has been exhausted – there were only two avenues of complaint and got nowhere either through non response or ignoring the concerns even when a Teams meeting was called.
Being labelled “vexatious” is just a means of silencing someone and making it difficult to voice valid concerns.
Discharged in such a state she could hardly walk and her breathing sounded terrible even picked up on my her former CC. Elizabeth relied on me for everything and every day I would visit her independent flat to help her in every way in the absence of a scrap of care being put in place. She could not even use her bath – she was around a size 24 from being held prisoner on a ward amber categorised where for some time following Xmas no fresh air or exercise allowed. This meant that the bath was totally inadequate for her and no measures had been put in place before discharge to tackle this despite there being ample time so the first thing I did was to try to help but between 28 May and 15 September absolutely nothing done about this and this was a risk factor under health and hygiene surely. This shows no communication or care from professionals under the NHS and LA – that is if the CMHT come under LA when they have NHS email addresses.
Most of the complaint was to do with NHS care and treatment on the ward and there was great confusion in ZH stating this had nothing to do with the PHSO when the NHS were the providing body of all care over the past year.
I used to go round to the flat to cook, clean, go shopping, buy food and other provisions, help with benefits, nursing care, try to persuade her to come round to the house for a shower. There was nothing provided. The GP was suddenly taking matters seriously with regard to her physical health because on the discharge note it was mentioned “abnormal findings on scan relating to CNS” – What is this exactly? Noone could give me an answer when I had questioned which CNS condition did Elizabeth have or is this pointing to injury?
The above highlights the treatment supplied by the NHS who have failed Elizabeth in the previous local area.
This is not private care provided by myself but funded by local Commissioners with the involvement of the local team who quickly recalled Elizabeth from one OOA institution when an autism assessment was offered by a specialist there.
The care she has had is fit for a Panorama programme in my opinion.
So having been dismissed like rubbish I have been advised that the entire matter is nothing to do with the PHSO but the LG Ombudsman and Police.
I will be adding to this blog in due course once I have the LG Ombudsman’s response because no I do not think this matter comes solely under the LG Ombudsman but jointly.
We have had to move away from an area where we have lived all our life to a new area where we know noone and there have been enormous problems but first of all before I write about everything I must give the LG Ombudsman the chance to look into the dismissal of the PHSO investigators.
I have been impressed in the past the way the LG Ombudsman dealt with a safeguarding issue where I managed to obtain the minutes so let’s see what they have to say about this whole matter and who is responsible.
No way should any complaint be dismissed like rubbish with no accountability and trying to pass the buck and this is how I feel we have been treated by the PHSO.
The complaint will now be sent to LG Ombudsman according to the advice of ZH and her Manager. I will inform you all of their response but I always thought that in areas where there is supposed to be integrated care then with NHS email addresses does this not come under NHS now? In other words who is actually responsible?
The LG Ombudsman is now dealing with the complaint and referral made to the joint working team.
I have received a letter from the Office of Public Guardian that I am being investigated as an Attorney and it would appear that someone – no doubt social services or medical team think that I am not fit to be an attorney re health and wellbeing and I am being accused of encouraging Elizabeth to stop taking the drugs. The drug being clopixol depot prescribed at 300mg every fortnight. The other attorney namely her father is also being accused and it would seem that someone has maliciously reported us. I would most certainly welcome the opportunity of clearing my name in this respect and have overwhelming documentary evidence going back to when we moved to a new area which I have not yet featured on my blog.
In blue I have highlighted the side effects Elizabeth is experiencing on the above drug which was prescribed at maximum level of 400mg now reduced to a still high dosage of 300mg. Below is taken from BNF Guidelines, link of which was sent to me when I contacted NICE recently to find out their recommendations on the withdrawal of the above depot. It is horrifying to note that NICE do not have any recommendations. The depot is being withdrawn by 50mg at a time following a review at every six weeks by ENFIELD COMMUNITY REHAB TEAM whose RC is Dr Ilyas Mirza. Elizabeth has just had a review from Dr Ahmad from the Community MH Team resulting in the reduction of 50mg bringing it down to 300mg. It is shocking to see so many terrible side effects that my daughter is suffering right now on this prescription but because of the fact that this is contraindicated to CNS she is having to go through agonising pain of withdrawal without any support and then all she wants is to be left alone as she recognises that she has been abused – she sees the depot as abuse. The question needs to be asked as to why she was ever put on it in the first place when although she took herself off Risperidone in one go cold turkey she was suffering terrible side effects on this and just look what Risperidone and Paliperidone causes in cases of autism which Elizabeth (not me) recognises as being HER condition. We await to hear the verdict from the Maudsley on diagnosis but one thing is for sure they can no longer pin the unscientific label of “paranoid schizophrenia” on my daughter and I await answers to my query on what is the correct diagnosis and I am not going to allow anything or anybody to cover this up.
I last spoke to Beatrice Awudu who completed the Discharge Note stating only physical conditions and I was told to contact Runa Bhoobun next but the question needs to be asked as to why this Discharge Notice did not come from Suffolk Ward itself rather than from the Home Treatment Team nurses. It is no wonder why my daughter does not feel well right now with this prescription in mind.
ZUCLOPENTHIXOL
Indications and dose
Schizophrenia and other psychoses
By mouth Unfortunately the guidance needed is on the depot
For Adult Initially 20–30 mg daily in divided doses, increased if necessary up to 150 mg daily; usual maintenance 20–50 mg daily (max. per dose 40 mg), for debilitated patients, use elderly dose.
For Elderly Initially 5–15 mg daily in divided doses, increased if necessary up to 150 mg daily; usual maintenance 20–50 mg daily (max. per dose 40 mg).
Contra-indications
Apathetic states; CNS depression; comatose states; phaeochromocytoma; withdrawn states Yes this explains why Elizabeth is being taken off it.
Cautions
For all ANTIPSYCHOTIC DRUGS
Blood dyscrasias; cardiovascular disease; conditions predisposing to seizures; depression; diabetes (may raise blood glucose); epilepsy; history of jaundice; myasthenia gravis; Parkinson’s disease (may be exacerbated) (in adults); photosensitisation (may occur with higher dosages); prostatic hypertrophy (in adults); severe respiratory disease; susceptibility to angle-closure glaucoma This is not looking good as it would appear that certain doctors have ruined my daughter’s physical health by their enormous prescriptions of antipsychotic drugs without a second thought to not doing harm to the patient.
Cautions, further information
Cardiovascular disease
An ECG may be required, particularly if physical examination identifies cardiovascular risk factors, personal history of cardiovascular disease, or if the patient is being admitted as an inpatient. AWAITED – Appointment recently cancelled by Inhealth private clinic referred to by NHS due to covid.
for all antipsychotics (other than quetiapine and clozapine) in patients with parkinsonism or Lewy Body Disease (risk of severe extrapyramidal symptoms)
in behavioural and psychological symptoms of dementia (BPSD), unless symptoms are severe and other non-pharmacological treatments have failed (increased risk of stroke) I cannot understand whyquetiapine and clozapine are in brackets. Quetiapine caused Akathisia and Clozapine NMS, and other extrapyramidal symptoms.
for use as a hypnotic, unless sleep disorder is due to psychosis or dementia (risk of confusion, hypotension, extrapyramidal side-effects and falls)
in patients prone to falls (may cause gait dyspraxia, parkinsonism)
if prescribed a phenothiazine (other than prochlorperazine for nausea, vomiting or vertigo; chlorpromazine for relief of persistent hiccups; levomepromazine as an antiemetic in palliative care) as first-line treatment (sedative, significant antimuscarinic (anticholinergic) toxicity in older people, and safer and more efficacious alternatives exist)—
if prescribed an antipsychotic drug with moderate or marked antimuscarinic effects (e.g. chlorpromazine, clozapine, flupenthixol, fluphenazine, pipothiazine, promazine and zuclopenthixol) in patients with a history of prostatism or urinary retention (high risk of urinary retention).
Agranulocytosis; confusion; embolism and thrombosis; neuroleptic malignant syndrome (discontinue—potentially fatal) Already had that on Clozapine which is why I took her off it.
Rare or very rare
Sudden death; withdrawal syndrome neonatal
Side-effects, further information
For depot antipsychotics—side-effects may persist until the drug has been cleared from its depot site.
Overdose
Phenothiazines cause less depression of consciousness and respiration than other sedatives. Hypotension, hypothermia, sinus tachycardia, and arrhythmias may complicate poisoning. For details on the management of poisoning see Antipsychotics under Emergency treatment of poisoning.
Extrapyramidal effects and withdrawal syndrome have been reported occasionally in the neonate when antipsychotic drugs are taken during the third trimester of pregnancy. Following maternal use of antipsychotic drugs in the third trimester, neonates should be monitored for symptoms including agitation, hypertonia, hypotonia, tremor, drowsiness, feeding problems, and respiratory distress.
Breast feeding
For all ANTIPSYCHOTIC DRUGS
There is limited information available on the short- and long-term effects of antipsychotic drugs on the breast-fed infant. Animal studies indicate possible adverse effects of antipsychotic medicines on the developing nervous system. Chronic treatment with antipsychotic drugs whilst breast-feeding should be avoided unless absolutely necessary. Phenothiazine derivatives are sometimes used in breast-feeding women for short-term treatment of nausea and vomiting.
Hepatic impairment
Manufacturer advises caution—monitor serum drug concentration.
Dose adjustments
Manufacturer advises dose reduction of half the recommended dose.
Renal impairment
Dose adjustments
Halve dose in renal failure; smaller starting doses used in severe renal impairment because of increased cerebral sensitivity.
Monitoring requirements
For all ANTIPSYCHOTIC DRUGS
Monitoring of patient parameters
It is advisable to monitor prolactin concentration at the start of therapy, at 6 months, and then yearly. Patients taking antipsychotic drugs not normally associated with symptomatic hyperprolactinaemia should be considered for prolactin monitoring if they show symptoms of hyperprolactinaemia (such as breast enlargement and galactorrhoea).
Patients with schizophrenia should have physical health monitoring (including cardiovascular disease risk assessment) at least once per year.
In children
Regular clinical monitoring of endocrine function should be considered when children are taking an antipsychotic drug known to increase prolactin levels; this includes measuring weight and height, assessing sexual maturation, and monitoring menstrual function.
Treatment cessation
For all ANTIPSYCHOTIC DRUGS
There is a high risk of relapse if medication is stopped after 1–2 years. Withdrawal of antipsychotic drugs after long-term therapy should always be gradual and closely monitored to avoid the risk of acute withdrawal syndromes or rapid relapse. Patients should be monitored for 2 years after withdrawal of antipsychotic medication for signs and symptoms of relapse.
Prescribing and dispensing information
For all ANTIPSYCHOTIC DRUGS
Patient decision aid
In adults
Antipsychotic medicines for treating agitation, aggression and distress in people living with dementia. National Institute for Health and Care Excellence. June 2018.
As photosensitisation may occur with higher dosages, patients should avoid direct sunlight.
Driving and skilled tasks
Drowsiness may affect performance of skilled tasks (e.g. driving or operating machinery), especially at start of treatment; effects of alcohol are enhanced.
Medicinal forms
There can be variation in the licensing of different medicines containing the same drug.
For the NHS to take someone off psychiatric medication this means that something they have discovered is wrong. The Drug Paliperidone was prescribed at the following hospitals:
Chase Farm Hospital Enfield
St Pancreas Hospital Ruby Ward
Cygnet Godden Green
Elysium Thornford Park
The Discharge Note points to CNS and all physical health but and no-one wishes to say what it is. The GP Surgery said they were told it was a mistake by Admininistration staff however we know this to be a lie. When I have confronted professionals to say that what they were doing was wrong the response has been one of arrogance. When I called at Chase Farm Hospital’s Foyer and complained that no-one could get through to Elizabeth and that we as a family were concerned. I was shown into an office on ground floor by SE with two others present.
When I complained about the medication Paliperidone (Risperidone Depot) previously found to be allergic to the response from AB was “Are you a Doctor or Nurse?” to which I replied “no” – I am just a mother. Her response then was “I went to University and I have a degree in nursing”. In other words you as a parent/carer are seen as nothing – your concerns are dismissed in that how could a parent/carer have a clue about the prescribed drugs. So I then stated that I had 5/6 drugs charts to indicate allergy to Risperidone. The RC told Elizabeth that “Risperidone is not Paliperidone” however I turned to leading experts for advice on the drugs/drug metabolism.
In conclusion, catatonia could be observed several weeks after titration to a therapeutic dose of paliperidone in a patient without other psychiatric or medical comorbidity. Prompt discontinuation of the implicated drug and giving benzodiazepines are beneficial in patients presenting with catatonic symptoms associated with antipsychotics.
Risperidone, an atypical antipsychotic, has been reported to induce catatonia in several patients, 1 4 Paliperidone, a major active metabolite of risperidone, was approved by the United States Food and Drug Administration (FDA) in December, 2006, for the treatment of schizophrenia.
Catatonia Associated with Initiating Paliperidone Treatment
Catatonia Associated with Initiating Paliperidone Treatment *Oregon Health & Science University, Department of Emergency Medicine, Oregon Poison Control Center, Portland VA Supervising Section Editor: Eric D. Isaacs, MD Submission history:
Submitted May 1, 2008; Revision Received October 15, 2009; Accepted October 25,2009 Reprints available through open access at http://escholarship.org/uc/uciem_westjem
We present a case of catatonia, which occurred shortly after starting a new antipsychotic, paliperidone, an active metabolite of risperidone.
Catatonia may be caused by a variety of conditions, including metabolic, neurologic, psychiatric and toxic processes.
Interestingly, risperidone, which has been thought to cause several cases of catatonia, has also been recommended as a potential treatment.
We discuss potential mechanisms for causes of drug-induced catatonia as well as potential treatment options. [West J Emerg Med. 2010; 11(2):186-188.]
INTRODUCTION Catatonia can be caused by a variety of metabolic, neurologic, psychiatric, and toxic conditions. Risperidone, an atypical antipsychotic, has been reported to induce catatonia in several patients,1,2 although paradoxically, antipsychotics, including risperidone, have been used successfully to treat catatonia.3,4 Paliperidone, a major active metabolite of risperidone, was approved by the United States Food and Drug Administration (FDA) in December, 2006, for the treatment of schizophrenia.
We report what we believe is the first case of catatonia temporally related to paliperidone, after a single dose.
CASE REPORT An 84-year-old female with history of major depression and anxiety was evaluated by her psychiatrist for worsening anxiety and given a single dose of 3 mg of paliperidone. Eight hours later she became increasingly agitated and, according to her daughter, “looked like she was going to crawl out of her skin.” She then told her daughter “make it go away, make it go away,” and subsequently stopped speaking and responding to any physical or verbal stimuli, although she appeared awake and alert. She had no prior documented episodes of catatonia. Her daughter brought her into the local emergency department (ED). In the ED, she had a temperature of 37.3°C, pulse 80 beats per minute, blood pressure 161/72 mm Hg, respiratory rate 20 breaths per minute and oxygen saturation of 98% on room air. Her medications were citalopram, trazodone, levothyroxine, and paliperidone. She lived with her daughter, who related no recent trauma. The patient previously took risperidone, but it had been discontinued after several months because of mild akathisia, with both restlessness and tremor. Physical exam showed an alert, well appearing elderly female in no acute distress. Her pupils were equal round and reactive to light; she would not comply with extraocular muscle testing. She did open her mouth on request and stuck out her tongue midline; there was no erythema, and mucous membranes were moist. Cardiopulmonary exam was unremarkable; abdominal palpation did not cause any change in her facial expression and was soft without masses. While she complied with several requests for the cranial nerve exam she would not move her fingers or toes when asked, but was noted to turn her head in all directions and roll from side to side, moving all extremities equally. Her brachioradialis and achilles reflexes were equal and Babinski reflexes were downgoing. She exhibited stupor and mutism with fixed postures. Finger-stick glucose was 114 mg/dL. Intravenous diphenhydramine, 25 mg and benztropine, 0.5 mg were given for dystonia without any change. Noncontrast head computed tomography (CT) was performed due to concern for stroke and was unremarkable. Laboratory tests showed white blood cell count of 7.4 K/mm3 with 60% neutrophils, her hematocrit was 37.6%, and platelets were 203 K/mm3 . Electrolytes and renal function showed sodium 135 mmol/L, potassium 3.5 mmol/L, chloride 101 mmol/L, bicarbonate 20 mmol/L, calcium 9.8 mg/dL, blood urea nitrogen 12 mg/dL, and creatinine 1.0 mg/dL. Due to the lack of inpatient psychiatric beds, she was observed in the ED for 12 hours. Psychiatric consultation had no specific recommendations. Sixteen hours after the dose Western Journal of Emergency Medicine 187 Volume XI, no. 2 : May 2010 of paliperidone, without other therapy, she began to talk and interact. More detailed neurological exam showed no focal deficits. Her mood and affect were appropriate. She did not recall the events of the previous evening but remembered her daughter talking, although she was unable to respond. DISCUSSION
Catatonia is a neuropsychiatric syndrome characterized by a combination of mental, motor, vegetative, and behavioral signs and symptoms.
It has been described as a syndrome with prominent motor signs, with positivistic or excitatory symptoms, including mitgehen, in which there are excited movements with light stimulation, even with instructions to the contrary.
Other signs include stupor, immobility, mutism, and negativism, including gegenhalten (increasing resistance to passive movement of the limbs), waxy flexibility, posturing, stereotypic movements, echolalia, and echopraxia.6 Mutism and stupor are generally regarded as principal signs of catatonia, although neither are certainly pathognomonic.
The Diagnostic and Statistical Manual of Mental Disorders, DSM – IV, defines catatonia as the presence of at least two of the following: motoric immobility, excessive motor activity, extreme negativism/mutism, posturing/ stereotyped movements/prominent mannerisms or grimacing, and echolalia or echopraxia.6 Our patient exhibited several of these features, including immobility, with posturing at times, and extreme negativism, including mutism.
While her presenting differential was broad, lack of fever, headache, and a normal white count were inconsistent with infection. A lumbar puncture was not obtained, but complete reversal of symptoms without other therapy would also argue against meningitis or encephalitis. Non-convulsive status epilepticus or partial complex seizures should also be considered, although there was no history of a previous seizure disorder. An electroencephalogram (EEG) should be obtained if clinical suspicion warrants.
Catatonia has been associated with schizophrenia, major depressive disorder, as well as other medical conditions, including alcoholism, bi-frontal tumors, encephalitis, transient ischemic attack, chronic obstructive pulmonary disease, rheumatic heart disease, Alzheimer’s and vascular dementia, central diabetes insipidus, closed head injury, end stage renal disease, and renal tubular acidosis.8 Neuroleptic malignant syndrome, as well as severe extrapyramidal reactions, may also present initially with catatonic features, and has been considered by some to be a subset of catatonia.9 While no studies have specifically evaluated the prevalence of drug-induced catatonia, studies regarding general causes of catatonia suggest that 17-19% of all cases diagnosed as medical catatonia are actually drug-induced catatonia.
Another study found that antipsychotic-induced catatonia accounted for 24% of all catatonic patients referred to the ED of a general hospital.
Drug-induced catatonia has mostly been reported with psychotropic drugs, including fluphenazine, haloperidol, risperidone, and clozapine,non-psychotropic drugs such as steroids, disulfiram, ciprofloxacin, several benzodiazepines, as well as drugs of abuse, including phencyclidine, cannabis, mescaline, LSD, cocaine and ecstasy.
While psychiatric disorders may simply cause catatonia, it does appear that medications themselves can either cause or unmask an underlying predisposition to catatonia. The mechanism by which medications cause catatonia is not known. Mechanisms have been proposed based on animal models: 1) dopamine hypoactivity at the D2 receptor, 2) GABA hypoactivity at the GABAA receptor and hyperactivity at the GABAB receptor, 3) serotonin hyperactivity at 5-HT1A receptor and hypoactivity at 5-HT2A receptor, and 4) glutamate hypoactivity at the NMDA receptor.
Paliperidone is the active major metabolite of risperidone. It was approved by the FDA in December 2006 and released to consumers in the United States in January 2007. Its therapeutic activity is believed to be a result of both central dopamine type 2 and serotonin type 2 receptor antagonism. It is also an antagonist at α1 and α2 adrenergic receptors and H1 histaminergic receptors.
Plasma concentrations are estimated to peak approximately 24 hours after dosing with a terminal half-life of approximately 23 hours. Bioavailability is 28% with apparent volume of distribution of 487 L. Plasma protein binding of paliperidone is 74%. Unlike risperidone, paliperidone is not extensively metabolized by the cytochrome P450 enzymes and is not expected to cause clinically relevant pharmacokinetic drug interactions.10,11 ED evaluation of patients who present with catatonic symptoms requires a comprehensive evaluation and a wide differential and should not be initially attributed to the underlying psychiatric disorder. Treatable common causes of catatonia should be ruled out. Further diagnostic and laboratory studies may include complete blood count, comprehensive metabolic panel, thyroid stimulating hormone, urinalysis, cerebral spinal fluid evaluation, CT, magnetic resonance imaging, EEG, and other studies as clinical history and physical findings dictate.
In most cases of drug-induced catatonia, stopping the implicated drug and supportive care is usually sufficient.
Benzodiazepines and electroconvulsive therapy have also been recommended as potential treatments.5,12
Typical antipsychotics such as haloperidol should be avoided, although a trial of atypical antipsychotics (e.g. risperidone, olanzapine) has been suggested for patients who do not respond to other measures.3,4,13,14
Caution should be taken in considering using paliperidone in patients who have already had previous adverse reaction to risperidone.
Anticonvulsants, valproate,1 and carbamazepine2 have also been reported to be effective but may take longer to work than benzodiazepines. The Naranjo scale of adverse drug reactions15 is a validated score that assesses the probability of a causal relationship between a drug and a clinical event and is Paliperidone-Induced Catatonia McKeown et al. Volume XI, no. 2 : May 2010 188 reported based on several criteria as definite, probable, possible, and doubtful. Although this medication-catatonia relationship was scored as “possible” on the Naranjo scale, there had been no other change in medications or initiation of other medications, which may have been responsible for her condition. Also of note is no previous history of catatonic-like symptoms presented prior to initiation or after discontinuation of the paliperidone.
SUMMARY: A number of medications have been associated with catatonia, including antipsychotics. Providers should consider multiple etiologies when evaluating a patient who presents with catatonia-like symptoms. Paliperidone, similar to risperidone, may be a cause of drug-induced catatonia.
Address for Correspondence: Nathanael J McKeown, DO. Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, Mail Code CB550, Portland, OR 97239. Email: mckeownn@ohsu.edu.
Conflicts of Interest: By the WestJEM article submission agreement, all authors are required to disclose all affiliations, funding sources, and financial or management relationships that could be perceived as potential sources of bias. The authors disclosed none. REFERENCES 1. Bahro M, Kampf C, Strnad J. Catatonia under medication with risperidone in a 61-year-old patient. Acta Psychiatry Scand. 1999; 99:222-6 2. Parraga H, Harris K. Catatonia under treatment with risperidone. J Dev Behav Pediatr. 2006; 27:369 3. Cook EH Jr, Olson K, Pliskin N. Response of organic catatonia to risperidone. Arch Gen Psychiatry. 1996; 53:82-3 4. Valevski A, Loebl T, Keren T, et al. Response of catatonia to risperidone: two case reports. Clin Neuropharm 2001; 24:228-31 5. Duggal HS, Singh I. Drug induced catatonia. Drugs of Today. 2005;41:599-607 6. Fink M, Taylor MA. Catatonia: A Clinician’s Guide to Diagnosis and Treatment. Cambridge, UK: Cambridge University Press; 2003 7. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th Ed. Washington D.C.: American Psychiatric Association; 1994 8. Huang TL, Ree SC, Huang YC, et al. Catatonic features: Differential diagnosis and treatments at an emergency unit. Psychiatry Clin Neurosci. 1999; 53:63-6 9. Taylor MA, Fink M. Catatonia in psychiatric classification: A home of its own. Am J Psychiatry. 2003; 160:1233-41 10. Paliperidone (Invega) for schizophrenia. Med Lett Drugs Ther. 2007;49:21-3 11. Invega (paliperidone) package insert. Janssen Pharmaceuticals. Issued 12/2006 12. Fricchione GL, Cassem NH, Hooberman D, et al. Intravenous lorazepam in neuroleptic-induced catatonia. J Clin Psychopharmacol. 1983; 3:338-42 13. Duggal HS, Nuñez CY. Risperidone treatment of periodic catatonia. Can J Psychiatry. 2005; 50:241-2 14. Hesslinger B, Walden J, Normann C. Acute and long-term treatment of catatonia with risperidone. Pharmacopsychiatry. 2001; 34:25–6 15. Kruger S, Braunig P. Intravenous valproic acid in the treatment of severe catatonia. J Neuropsychiatry Clin Neurosci. 2001;13:303–4 16. Kritzinger PR, Jordaan GP. Catatonia: an open prospective series with carbamazepine. Int J Neuropsychopharmacol. 2001;4:251–7 17. Naranjo CA, Busto U, Seller EM, et al. A method for estimating the probability of adverse drug reactions. Clin Pharmacol Ther. 1981; 30:239-45
Catatonia and catatonia-type breakdown in autism
Published on 06 December 2016
Author: Dr Amitta Shah
Dr Amitta Shah is a Consultant Clinical Psychologist with over 35 years’ experience in working with autistic children and adults. She has expertise in the diagnosis and management of catatonia in autism and has published papers on the subject with Dr Lorna Wing. Here she shares her insight and expertise of this under-recognised and poorly understood condition.
What is catatonia?
Catatonia is a complex neuro-psychological disorder which refers to a cluster of abnormalities in movement, volition, speech and behaviour. Historically, the term catatonia has been associated with schizophrenia and psychoses,but it is now recognised that it can occur with a range of conditions.
Catatonia in varying degrees can occur in autistic children and adults. Studies suggest that between 12-18% of autistic people may present with varying levels of catatonia (Wing & Shah, 2000; Billstedt et al. 2005; Ghaziuddin et al, 2012). However, actual prevalence is likely to be higher as there are probably a lot more people with autism and catatonia who do not have a diagnosis and are not known to services.
Clinicians do not generally recognise the gradual presentation which occurs in autistic people rather than the full blown catatonic stupor state which is easy to diagnose and familiar to clinicians. Thus, catatonia type breakdown is rarely picked up at an early stage, and often misdiagnosed and mistreated. However, if it is picked up early, it is easier to treat and can be reversed. Catatonia type breakdown can progress to full blown catatonia which is extremely difficult to treat and can lead to total immobility, dependence on all aspects of daily living and can become life-threatening.
Catatonia-like breakdown causes enormous stress to families and affects the quality of life of the individual concerned in extreme ways. It is acknowledged that it is difficult to diagnose and treat especially as the symptoms and severity can fluctuate from day to day and also over time. It is one of the most enigmatic and challenging aspect of autism but the lack of clinical and research interest in this condition is of great concern and needs to be addressed.
Symptoms of catatonia in autism
As early identification and diagnosis is important, it is crucial for all relevant professionals, clinicians, parents and carers to be aware of early indicators of a catatonia-like breakdown in autistic people. In particular, catatonia-like breakdown should be considered as a possible diagnosis for any autistic individual who shows a marked and obvious deterioration in:
movement
volition
level of activity
speech
a regression in self-care, practical skills and independence compared to previous levels.
Specific indicators of an onset of catatonia type breakdown may include any of the following:
increased slowness
freezing during actions
increase in repetitive movements and hesitations
difficulty in crossing thresholds and completing movements
marked reduction in speech or complete mutism
difficulty in initiating and inhibition of actions
increased reliance on physical or verbal prompts for functioning
increase in repetitive and ritualistic behaviours
getting locked in postures.
Treatment
There is very little research evidence to guide medical treatment of catatonia in autistic people. The studies which are published on the treatment of catatonia in autism spectrum disorders (ASD) are mainly single case studies using various psychiatric medications or electroconvulsive therapy (ECT) for cases with acute catatonic stupor.
There is a recent paper (De Jong, Bunton and Hare, 2014) which has reported a systematic review of the literature on all interventions used to treat catatonic symptoms in autistic people. The conclusions are that the quality of the studies is poor and there is no convincing evidence that any particular medication or ECT is effective for catatonia type breakdown. The studies also worryingly ignored the side-effects of these treatments and rarely reported long term follow-up of effects.
In the absence of relevant good quality evidence based research, it is important for professionals and carers to refer to guidelines developed by experienced clinicians. Treatment guidelines based on clinical experience are given for mild, moderate and severe catatonia in Dhossche, Shah and Wing (2006). It is imperative for clinicians not to overlook that psychiatric medications may trigger or worsen Catatonia in autistic individuals. Also, drastic treatments such as ECT and/or high doses of lorazepam should only be tried as a very last resort in cases of severe catatonia which is life-threatening.
We recommend a psychological approach which is based on our finding that stress and anxiety, and side effects of psychiatric medication are the main causes of catatonia-like breakdown (Wing & Shah, 2000). This is an individual approach which investigates the particular stress for the person concerned and addresses this based on a comprehensive psychological assessment and working with carers and local multi-disciplinary teams to implement a holistic plan. This is described in Shah and Wing (2006). The main aspects of this approach include the following:
early identification of possible indicators
psycho-education to promote understanding of the condition, in particular to carers, professionals and service providers
searching for and eliminating any possible causes such as psychiatric medications
assessment of the person’s autism and their vulnerability to stress
identification of stress factors which may include environmental, lifestyle, and psychological
reducing and eliminating stress factors which may include changes in the environment, daily programme, increased staffing and support, etc.
providing verbal and physical prompts to overcome movement difficulties
maintaining and increasing activities which the person enjoys or has done so previously
providing external stimulation and motivation at appropriate levels to keep the person engaged and responsive and active
increasing structure and predictability and occupation.
Exhaustion (fatigue) and then burnout can happen to anybody. Being autistic can make fatigue and burnout more likely, due to the pressures of social situations and sensory overload. If your child or the person you care for is experiencing fatigue or burnout, helping them to manage their energy levels is essential, as this guide explains.
What is autistic fatigue and autistic burnout?
‘Autistic fatigue’ and ‘autistic burnout’ are terms that came from autistic people, and we are learning from the experiences of autistic adults.
Fatigue, and then subsequent burnout, can happen to anybody. Autistic people, however, can be more susceptible to both, due to the pressures of everyday life, having to navigate social situations and sensory overload.
Trying to cope with these pressures can lead to exhaustion (autistic fatigue) and over time this can lead to extreme exhaustion or autistic burnout.
Autistic adults have described various ways that autistic fatigue and burnout have affected them. Autistic fatigue has often been described as exhaustion with additional difficulties such as:
increased meltdowns and sensory sensitivity
physical pain and headaches
physically shutting down, including the loss of speech.
Autistic burnout affects all aspects of a person’s life, and this makes it different from professional burnout, which is related to work.
What causes autistic fatigue and burnout?
There are various things that can cause autistic fatigue. Autistic adults suggest several causes, including:
sensory overload
dealing with social situations
masking or camouflaging their autistic traits
suppressing stimming
a sense of not meeting other people’s/society’s expectations of them.
Changes in your routines or day-to-day life, such as a change of school or job, can increase anxiety and can be additional causes for autistic fatigue and burnout.
Due to increased sensitivity and stress levels during autistic fatigue, your child may be less able to recover quickly from meltdowns. This exacerbates the exhaustion and stress they experience.
What can I do if the person I care for is experiencing autistic fatigue and burnout?
Use energy accounting
Energy accounting is a system used to set manageable limits on your energy levels so you do not deplete yourself to the point of burnout.
Help your child or the person you care for to set a limit on how much energy they have in a day or week and estimate how much certain activities drain them. Also work out how much certain activities energise them.
You can then try to plan and balance their activities and energy over a day or week to try and manage stress limits. Make sure you build in time for relaxation and recovery.
Time off and rest/relaxation
Whether you use energy accounting or not, time off from work or school and other high-stress activities is key to managing stress levels. Ensuring time for activities/interests that re-energise and promote relaxation is key. This could be connecting with family and friends or enjoying hobbies or interests.
Time without having to mask
Autistic people often feel the need to hide or mask their autistic traits in public, for example by suppressing the urge to stim. It can be important to factor times into your child’s day for things like stimming, somewhere they feel comfortable and able to do so.
Anyway there is no doubt my daughter Elizabeth has had the most horrific time prescribed drugs that all physicians were well aware there was previous allergy recorded yet they continued. The Doctors were well aware because I sent the drugs charts with a line put through Risperidone as being allergic to. Most concerning of all the SOADs provided by the CQC did nothing to protect Elizabeth and allowed maximum levels of drugging to the point she is recorded as being of “high risk of mortality” Mews Score 3.
The rest of the family came to visit Elizabeth yesterday and were in tears at her decline.
Elizabeth spent most of the time asleep in her bed. She also suffers incontinence – there is something wrong with her breathing. They have discharged Elizabeth with Catatonia – now they are having to take her off the antipsychotic drugs which caused this condition. I would accuse Barnet Enfield and Haringey MH Trust of causing injury and all the other hospitals of going along with treatment that clearly was not working resulting in seclusion after seclusion – nothing but punishment.
Elizabeth knows there is something very wrong with her right now. She has spoken that she is too damaged to fix.
Parents/carers like me are left to pick up the pieces and I believe there was a reason why Elizabeth was scheduled to go to the Priory – all of this would have been simply covered up if that had happened.
A big thank you to NAS, Mencap and Access Charities for helping us.
Psychiatric Abuse UK 