CYGNET APPLETREE

FREDERICK STREET MEADOWFIELD

COUNTY DURHAM DH7 8NT

Dr Khalli  Memon (RC)

Transferred from Ash Villa Sleaford Elizabeth was placed on Pippin Ward

Elizabeth was taken there on 28 June 2023.

Ash Villa, Sunday 25 June 2023

Turned up without scheduled appointment as I was unexpectedly in the area. Elizabeth was still in her nightdress nightdress late afternoon.  I had brought her Mexican food.  When I arrived at one point I sat in the foyer and heard that a nurse/deputy manager had alleged she had been pushed but there were varying contradictions on account of what actually happened.  Elizabeth claimed to be in her room at the time and the nurse said she was sitting on a chair however Elizabeth’s account of what happened was very different to what the nurse said. I was informed by Elizabeth the following comments were made:

“I am coming into your personal space and do not give a s**t”.

That would have been provocation and I know this goes on, especially at this institution run by LPFT where I was approached in the grounds outside by several patients who had informed me Elizabeth was being picked on and abused and frequently injected and put in seclusion and that they, the patients were doing the safeguarding. She was certainly treated very differently to other patients as though she was on a DoLs and like a restricted prisoner. Then I found out for 20+ months this facility was being provided and paid for by Enfield, my former area where we could no longer stand living there.

Police were apparently informed. So I made sure when I got home I called the Police myself to ensure they heard Elizabeth’s account of what happened and I got a reference number myself. Each time I asked Elizabeth to repeat what happened, her words did not differ. The alleged incident led to Elizabeth’s abrupt transfer to PICU Unit Cygnet Appletree, Durham completely out of the blue.

Arrival – Cygnet Appletree 28.06.2023

Elizabeth had her phone at Cygnet Appletree to begin with on arrival.  She texted me on arrival.

At 03.03    26.06.23 Elizabeth stated:

“sorry Mum they sprang it on me and I had to leave the hospital to go to PICU”

She then texted me to stated “Meadowfield.”

She then texted me to say “I’ve got a nicer room here at least”

“I got treated to a big mac and fries and chicken nuggets” – message at 03.05

“I have passed on your phone number and they will contact you in the morning”.

“When r u coming to see me?”

“I would like some money”

26 June 2023

“Can you pl buy me some shorts and bring them when you next come plus some sungod sunglasses renegades”

She repeated she wanted some Sungod renegades sunglasses from youtube.

She also asked me “hello when are you coming”? at 16.07.

She had asked for money but when I phoned the hospital they do not have a deposit account for patients.   I ordered a pre paid card as being in hospital would not like actual bank card to go astray.

Elizabeth had not picked up any messages since Wednesday 28^th June at 16.08.

I did get a call from someone the next day but it was very brief.  Just to say she had arrived safely but no further information given.    That is the last I heard from her.

Telephoned Cygnet 01.07.2023

Spoke to nurse HANNAH BROWN Pippin Ward.

I asked if Elizabeth had her phone with her and that I could not get through.  I was told  “sorry I cannot give you any information”

I told this nurse that we pay a contract for the phone.  Again she could not give any information.

I asked about visiting hours and was told to call back in the week.

I felt distinctively like they were deliberately not allowing me to speak to Elizabeth and that her phone had been taken away as she had been asking me to visit. In fact I later found out her phone was confiscated because she had called Police in desperation.

I was informed by this nurse she had to hang up and could no longer continue to speak to me any more as she was the only nurse on duty and there was an alarm going off.   When I questioned her being the only nurse on duty she then reported that there was another nurse there but she was in a meeting.

I was told to ring back in the week.

04.07.2023   Telephone call to Cygnet Appletree

Spoke to Kim – reception who told me there was no direct line to ward or ward phone number to ring on.

She then transferred me to ward – no answer at first so was holding on a long time.

Then spoke to Aaron – Support worker

Then spoke to Adrian – a nurse

Finally spoke to Keeley, Ward Manager who told me Elizabeth had her phone but I questioned this as no messages had been picked up via WhatsApp since since 27 June.

Because I am no longer nearest relative (only Power of Attorney) no one would speak or give me any information but I was not asking for any information.  They would not say how she or allow me to speak with her directly.   Elizabeth has been sent a long distance from home right now – at least 3.5 hour journey there and another 3.5 hours back.

I told Keeley that I needed to speak to Elizabeth as she had asked to see me and I wanted to discuss something with her. I was told that they would pass on the message and if she wanted to get in touch she would. I felt as though contact was being deliberately denied.   I said that I would telephone every day until I spoke to her, that way I would be building up a record as I felt sure that they were depriving contact by not allowing her to have her mobile when other patients were allowed in fact.  Keeley admitted some patients were allowed their mobile phones whilst others were not.   I said surely that was discrimination so she said that it depends on the risk level.   What risk exactly?  I am 3.5 hours away now and cannot visit and this was the one thing Elizabeth enjoyed ie my regular visits whilst at Ash Villa.   So I have decided to ring every single day to build up a picture before deciding upon what action to take.  I have already been told that I could not visit at this stage.  At Ash Villa I was aware Elizabeth had no solicitors and other patients were trying to help her appoint them. On a couple of occasions Elizabeth picked up the phone herself but solicitors did not bother to come and see her or respond. There is no saying whether Elizabeth has got any solicitors acting for her at Cygnet either or whether her nearest relative was helping in this regard or even aware of where she had been placed.

05.07.2023   12.40  Another family member spoke to  Catrina, a  Support Worker on Pippin Ward.  She said she would take Elizabeth to a room so that she can make a call back but no call back was ever received.

Subject: Re: Elizabeth’s Move to Cygnet Appletree

“It is of course the case that the MDT have every right to refer Elizabeth to the PICU and the medical & social work professionals will be the final decision-makers on these issues.  It is PICU policy however that the patient in a PICU is “Nothing about me without me”.  That means that the patient effectively has the last word. No they dont! certainly not to frequent torture of rapid tranquilisation.  No patient can be compelled to take part in the OT and psychotherapy so a simple refusal to do so means they will not be forced.  If they maintain this position they will be returned to the psychiatric hospital. No psychological input given whatsoever just like at Ash Villa and Charlesworth Ward Lincoln. 

Cygnet and Ash Villa can of course transfer Elizabeth back to Ash Villa if she does not respond to interventions or if she tells them she wants to go back there.  Patients are not compelled to remain in the PICU and can be returned to adult care wards.  This often happens within the first six to eight weeks if the ICU interventions don’t work or the patient will not engage.  Elizabeth did not want to go back to Ash Villa and as for interventions every few days it would appear she was injected. I have now requested to know how many times.

The advantages of the PICU over the acute adult care ward are obvious, the presence of a psychopharmacologist alone is miles better than that seen on wards.  Not helped one bit – frequent rapid tranquilisations given.

It is my opinion that the visits will be limited in the early stages of Elizabeth’s stay at this place.  They need time & space to commence the interventions and as I have just said if it doesn’t work they will transfer her back to Ash Villa indefinitely. Never got to visit because of distance but was planning to. Absolutely nothing whatsoever has worked because of no psychological input.

Sent: 01 July 2023 19:00
To: susan bevis
Subject: Re: Catalogue of events

The treatment period in ICU/Rehab is between one and two years.  It involves psychotherapy, work regimens and other time consuming interventions as well as monitored medication. Nothing but rapid tranquilisation.

It is possible that Lincolnshire Social Services have been in touch with the PICU regarding the recent litigation.  It is social services that are responsible for paying for the s.117 aftercare not the NHS Trust. This is not aftercare it is a hospital facility well and truly out of area and must be costing I assume LPFT an absolute fortune.

It is unlikely this will be permanent as there is case law preventing the exclusion of family but they will certainly want to exercise close control since rehabilitation involves far more intensive involvement between staff and patients.  Elizabeth is undergoing exactly the same process in a similar unit.  She is given more leave and the accommodation and food are a major improvement on the acute admission unit.   Never got to have leave as she has now been transferred back to Boston today 05.08.2023.

The major problem is the loss of the NR status which means they do not have to communicate with you regarding Elizabeth’s care.  This is unacceptable as a carer you should be communicated with. The MHA 1983 negates the medical provisions of any POA so you cannot invoke that.  To recover the NR status  would require a challenge to ******* again.  It is exceedingly unlikely that would succeed. That is because the whole court process should be open, transparent and honest.  This is public money and Elizabeth like myself want this to be made public. I have therefore requested that this is done. There needs to be accountability in evidence.

On Saturday, 1 July 2023 at 18:32:04 BST, susan bevis <susanb255@outlook.com> wrote:

DR MEMON CALLED FROM CYGNET –  HE SEEMED VERY NICE AND SEEMED TO GENUINELY LISTEN.  HE WAS INTERESTED IN SEEING THE PRIVATE MRI SCAN RESULTS I HAD DONE ON ELIZABETH BUT I SAID I NEEDED HIS EMAIL ADDRESS TO SEND THIS AND OTHER INFORMATION.  STILL WAITING FOR THIS ON 10 JULY 2023.  I MENTIONED TO DR MEMON THAT NOW ELIZABETH WAS A LONG DISTANCE AWAY FROM HOME AND AT LEAST 3.5 HOURS JOURNEY AND I ASKED HIM WHAT FLEXIBILITY COULD BE OFFERED IN TERMS OF VISITING HOURS.  I MENTIONED THAT ELIZABETH DID NOT HAVE HER PHONE AND WE HAD NO CONTACT AND HOW AWKWARD IT WAS TO KEEP IN CONTACT NOW AS I WAS USING WHATSAPP TO MAKE CALLS AND SEND PHOTOGRAPHS OF HER CAT.

THURSDAY 6^TH July  CALL AND VOICE MAIL MESSAGE FROM KEELEY, WARD MANAGER OF CYGNET APPLETREE AT 18.07

MONDAY 10.07.2023     16.14

Received a voicemail message from Elizabeth – first time I have heard from her since moving to Cygnet Durham on 28 June.  

At 16.15 just had the phone put down on me by a member of staff at Cygnet who refused to give her name and said she would pass my call on to her manager.  The Manager of the ward is namely Keeley.   Elizabeth did not sound good on the phone at all and sounded quite distressed.

“Hi mum it’s me Elizabeth I’m not having a good day” please can you call me back on the ward.   She then gave me the number of the ward which is 0191 378 2747”  Now waiting for the ward manager to ring me back that is if I ever get to hear from her.   Time is 16.21    MONDAY       10.07.2023.

I had initially complained about the problems getting through on the phone. Here is the response I received:

Our ref: ENQ1-16584485228

Susan Bevis

Via email: susanb255

25^th July 2023

Dear Mrs. Bevis

Re: Service manager’s review of complaint dated 25^th July 2023

I would once again like to thank you for bringing your concerns to my attention. The investigating officer has looked into the concerns that you have raised and has shared the outcome of their investigation with me. iNCORRECTLY

I have considered the findings from the investigation and I set out below my response to each of the points that you have raised. You have told us that:

You are the mother of vulnerable 36 years old daughter, and 4-5weeks ago she was moved to new service Cygnet Appletree and daughter is under section 3. Caller stated she is autistic and cannot stand the noise and has been moved hundreds of miles away from family so you stated this is Article 8 of human rights breached. Not quite! I stated her phone had been taken away/that we could not get through on the phone. That is what I meant as being in breach of Art 8 HRA.

I have spoken to Dr Memon who confirmed that he had been in discussion with you regarding the care and treatment of your daughter. I will confirm what he has informed me by providing extracts from his email.

I have spoken to Susan Bevis mother of EB on 6^th of July and had a lengthy discussion around EB, reason of her admission to us and explained how we work and provide care to her daughter. I reassured her that we will try our best to provide best care possible to EB. We have recognized that the ward which is PICU can be noisy and we have continued to liaise with EB’s home team to repatriate her back to her home area as soon as our assessment completed. Since her admission, we have had meeting with her home team as well as home team attended ward round every week in order to get update EB’s progress.

For the past two weeks we were clear in our conversation that she can be transferred back to her home area whenever bed is available because of her being sensitive to noises and her being settled with her mental health,. We received an update from home team that she may be return back to her home area next week but it depends upon local bed availability. I tried to contact her mum on 14^th of July 2023 but call went on to voice mail and message was left to contact me. To sum up we already recognized and started liaising to her home team to transfer her back to nearby home area.

While we were waiting to hear from her home team around her transfer back to nearby home area, EB has been given section 17 leave to spend time outside the hospital and small radio as well as ear defenders have been given in order to reduce level of noise and has been given opportunities to involved in ward base activities. During the ward round on last Tuesday team discuss this with EB and she was very happy and appreciated the care she is receiving from Appletree.

Having taken into consideration the comments of Dr Memon I cannot uphold this part of your complaint. There was only one thing and that was being able to get through on her phone but now I have other much more serious concerns.

Second concerns around Phone: No it was about the phone and contact difficulties I complained about.

I have been informed and discussed in our multidisciplinary meeting that EB’s phone was removed because her calling to emergency services inappropriately and it was causing distress to Elizabeth, which can impact on her mental health. No again she was distressed on being so far away from home in a strange environment and she called police in desperation. She claims to be autistic and has sensory issues. It was her transfer and trauma of being transferred that led her to call police.

Following detailed discussion in the multidisciplinary meeting, the outcome was to commence two supervised periods of using phone within 24 hours till she becomes more settled. It was observed and noted that EB was using phone appropriately during twice supervised period and did not show any distress, therefore phone was return back to her on 14^th of July 2023 without any concerns.  I have personally spoken to Elizabeth and she was ok with it. Elizabeth had no say in anything. We were not happy as we pay a contract on the phone. She is no better and you have not provided any psychological input which is atrocious same with Ash Villa.

I am satisfied that no member of staff is preventing Elizabeth from calling you and therefore I cannot uphold this part of your complaint. When I called as I have accurately noted, it took several people before finally reaching the manager and this had nothing to do with confidentiality as we pay for a phone contract.

I appreciate you taking the time and effort to raise your concerns. Concerns raised

provide us with an opportunity to look at the care and treatment that we provide

and to learn lessons.

Whilst I am unable to uphold the issues that you have raised, I do accept

that they are valid concerns from your perspective. I hope that my responses

reassure you that I have given serious consideration to the matters that you have

brought to my attention. Nope I am not satisfied – eventually she got her phone back but it was distressing not being able to get through and having no contact.

If you have any concerns arising from the above, Dr Memon or Keeley Syed, Ward Manager, would be happy to discuss these with you. Alternatively, should you be dissatisfied with the response that I have provided the next stage in Cygnet’s complaints procedure is to request an Operations Director’s review. The Operations Director for Cygnet Appletree is Mrs. Frances Bergin. Cygnet Hospital Appletree. Frederick Street North. Meadowfield. Durham DH7. I shall be writing about wanting to know how many times my daughter was rapidly tranquilised as I know that this was being done very frequently as I had been keeping records of what Elizabeth told me. Also I wish for her new shoes that went missing to be replaced and so I will be sending you the receipt for reimbursement.

Should you request an Operations Director review please set out clearly the elements that you are dissatisfied with and the reasons why. Yes I had further concerns of an even more disturbing nature and requested to know how many times had Elizabeth been rapidly tranquilised following frequent moments of inconsolable distress? I am waiting to hear this.

Thank you for taking the time to make us aware of your experiences. Our experience has been appalling because it was most distressing not to be able to get through.

Yours sincerely,

Martin Graham

Hospital Director

Cygnet Hospital Appletree

This is the kind of thing I have heard numerous occasions “lessons learnt” Nothing is ever learnt so it would seem.

TRANSFER TO WARD 12 PILGRIM HOSPITAL BOSTON 05.08.2023

No-one in the family had been notified but this evening I got a call from Elizabeth to say she had been transferred to mixed ward Ward 12 at Pilgrim Hospital. I was far from happy as no-one informed us. Also this ward is highly unsuitable because it is a mixed ward and another dormitory ward completely and uttlerly wrong! She is now 1 hour’s journey away and now back under NHS “care” of Lincolnshire Partnership Trust. I am assuming they (LPFT) not Enfield are now funding hospital care in this area as previously Ash Villa was paid for by Enfield. No wonder why I was cut out of all the meetings etc. I bet the ward and facilities are nothing compared to private sector Cygnet that had ensuite to every bedroom. Surely that should be the basic requirement for any MH ward. A dormitory accommodation had previously proved to be totally unsuitable as per Charlesworth Ward.where Elizabeth tried to gouge her eyes out in distress because of the noise and had to be put in a side ward. However there is a patient occupying the side ward because of possible covid. It is also a mixed ward which will be quite teryfying

If you weigh up the risks Elizabeth would be better off at home. The annex has been built now. Nothing I can do right now but any changes and unfamiliar surroundings is like hell on earth for my daughter who now has frequent bouts of “inconsolable distress” and all thanks to her appalling treatment under LINCOLNSHIRE PARTNERSHIP TRUST. We moved to try to provide the right environment. We overlook the sea and beach. The area is beautiful and the people friendly. I am heartbroken that LINCOLNSHIre PARTNERSHIP PARTNERSHIP TRUST AND COUNCIL have treated us like objects and have failed in every way. The facilities are totally wrong for Elizabeth. A care farm or Camphill Community Trust would have been better. She has had food and water snatched and been subject to frequent rapid tranquilisation. When is this ever going to end. It is like a never-ending nightmare. Staff do not understand how to communicate with my daughter and choose to ignore her constant statements that she is autistic.

They have also failed to properly assess her for her physical health denying referrals to an endocrinologist but now I have the genetic tests which I managed to find. I now would like referrals to an immunologist/geneticist. I have had to pay privately for the MRI scan as this was being denied to her. Her discharge note states ONLY PHYSICAL “ABNORMAL FINDINGS ON SCAN POINTING TO CNS. WELL NOW I WANT TO KNOW WHAT THAT MEANS EXACTLY.

“It seems odd that after all this time that no progress has been made at all in Elizabeth’s recovery. My initial presumption is that she ‘s been medicated with drugs that she is treatment refractive to.  We have discussed this on many occasions.  If she cannot metabolise the drug it will not ameliorate her condition.

It seems we have gone back in time to the Victorian asylum model where Ash Villa is concerned.  

It is a terrible shame that some still want to lock patients away and throw away the key after all the progress that was made.  Some patients had been stuck on wards for years but it was amazing how rapidly they recovered with support in the community, some had jobs and looked after their own budgets and appointments. Presumably it is to do with the control of the aftercare.  They want to either discharge EB to sheltered accommodation or send her there on extended s.17 leave

EB is being kept for a ridiculous length of time on an acute ward.  That is now encroaching on the human rights issues, unwarranted deprivation of liberty, Art. 5 ECHR, in excess of what is necessary for safety and treatment, violation of Art. 8 family and privacy rights and of course the abject paranoia that has been directed towards Susan’s blog, Art 10 ECHR.

In the community the tests can easily be arranged.  Endocrine function is the province of immunologists and the limbic system the job of the neurologist.  A GP referral will of course be needed.

Ash Villa is a shambles and LCC and LPFT are struggling not very effectively to hide that.  The treatment of eLIZABETH is incompetent and the over zealous use of PRN and seclusion a human rights violation.  That is what they want whacking with.

The failure to carry out a proper capacity assessment and the refusal to properly investigate potential medical conditions interfering with the treatment is staggeringly unprofessional.  If EB has an endocrine disorder and she almost certainly does.  If she had inflammatory disorders they would interfere with the drug metabolism.  We already know she is a poor metaboliser but they continued nonetheless to treat her with medication that almost certainly would not work.  This should be thoroughly investigated and I suspect they do not want an NR that might insist on it.  

It is not ‘low dosage’ or ‘high dosage’, it is minimum therapeutic dosage.

The test is serum concentration and not daily/weekly/monthly dosage.

Maximum doses or anything like them are never justified.  If a patient is not responding within the therapeutic band it is extremely likely that they are poor or non-metabolisers. 

They are NOT treatment refractive.  A disgraceful attempt at making this a medical definition when it is a pharmacological one. 

If a patient is a poor metaboliser increasing the oral or parental dose will make no difference.  This is all to do with CYP450 cytochrome’s.

What I find absolutely staggering is that my 21 year old third year students understand this quite clearly while many 50 year old psychiatrists have not got a bloody clue. ”