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There has been a Community -‘style’ review organised, a second one, the first held last year excluding everyone in the family. This time I have written to Ms Amanda Pritchard of NHS England out of concern as it would appear nothing has been arranged fairly and I see this as a safeguarding concern.

What is a CTR?

I printed off the Care and Treatment Review Code and Toolkit (A Guide for commissioners, panel members and people who provide support). I then read carefully through each Standard and Principle. I would recommend every parent and carer print off this guide and check that the CTR is being arranged correctly and that they are included.

The purpose of a CTR Code and Toolkit is to provide a solid framework for CTRs in order for them to be delivered to a consistently high standard across England. Unfortunately, I am critical in respect of the way the CTRs have been arranged. I feel what is the point of them if they are not arranged properly and inclusive of the family/carers. The CTR is focussed on people who have been, or may be about to be admitted to a specialist mental health/learning disability hospital either under the NHS or independent sector and the ‘spirit’ in which they are carried out is paramount and rooted in principles of human rights, person-centeredness and co-production.

KLOE

Does person need to be in hospital?

Is person receiving right care

Is person involved in their care and treatment?

Are the person’s health needs known and met?

Is the use of any medicine appropriate and safe?

Is there a clear, safe and proportionate approach to the way risk is assessed or managed?

Are any autism needs known and met?

Is there active planning for the future?

Are family and carers being listed to and involved?

Are person’s rights and freedoms being protected and upheld?

It is the fourth year of detention and prior to moving she was living peacefully in the community compliant with treatment. I cannot see any of these questions, standards of principles being included in a CTR style review which I think is a complete and utter waste of time and none of the panel appear to be completely independent as I have checked.

It is supposed to be Person Centred but instead of this it would appear that institutional plans overall everything. There is no communication and with family excluded it gives me no hope that this CTR will result in fairness towards Elizabeth taking her wishes into account which is why I have turned to NHS England – Amanda Pritchard to scrutinise what is going on. Elizabeth’s wish is to come home to her independent bungalow next to family home.

The Standards are really interesting:

1.1 – Person and their family will be given information about the CTR in advance. Oh no they haven’t!

1.5 – Panel will make time available to meet separately with person and their family carer. Nothing properly arranged here.

3.1 – Where concern person’s human rights may not be being upheld. This is most certainly the case all along.

3.2 – Advocacy – provision of independent advocacy. There is no trustworthy independent advocate whatsoever as the advocates employed by the Trust have breached confidentiality in a capacity assessment on “Whether or not to have any Contact with Mother”.

3.3 – CTR will ask about legal framework for purpose eg at tribunal. THERE IS NO LEGAL REPRESENTATIVE EVEN THOUGH ELIZABETH HAS TRIED SEVERAL TIMES TO PHONE SOLICITORS – HER PHONE TAKEN AWAY AND HELD SECURELY, IN BREACH OF ART 8 HRA AND ALL CALLS SUPERVISED AND RECEPTION OF HER PHONE IS NOT GOOD. IT WOULD SEEM HER RIGHTS TO LEGAL PRIVILEGE ARE BEING OBSTRUCTED AS CALLS ARE SUPERVISED AND NO PRIVACY ACCORDING TO ELIZABETH.

4.1 CTR should take a day to complete. So in that case why have I just been invited for half an hr?

4.3 People supporting person should be at the CTR inc LA So could that be why I am only invited for just half an hour I wonder?

4.4 Physical health and general wellbeing. Private scans I paid for have indicated an anomaly (possible lesion) in the right hemisphere of the brain in an area where the meso-limbic pathway is located.

This lesion could be seen using the NHS approved DICOM (Digital Imaging and Communications in Medicine) an internationally recognized standard for storing, transmitting, and viewing medical imaging data, including MRI brain scans. The NHS and many healthcare systems worldwide rely on DICOM-compliant software to ensure interoperability between imaging devices and systems.

In Elizabeth’s scan the apparent lesion could be observed in three planes and triangulated to an exact position in the brain. The anomaly (lesion) appeared in the Axial Plane (Top to Bottom):

Also called the transverse plane, this section runs horizontally through the body, dividing it into superior (top) and inferior (bottom) sections.

The image was also visible in the Coronal Plane (Front to Back). This plane runs vertically, dividing the body into anterior (front) and posterior (back) sections.

And in the Sagittal Plane (Side to Side) This vertical plane divides the body into left and right sections.

A mid-sagittal plane runs exactly in the middle, splitting the body into equal left and right halves. A para-sagittal plane is offset from the midline.

The potential lesion is found at the right of the interhemispheric fissure in the sagittal plane, and of the superior in the axial plane and slightly to the anterior on the coronal plane

DICOM ensures that imaging data from MRI, CT, X-rays, and other modalities can be stored, transmitted, and viewed across various systems and software platforms.

It is widely adopted in healthcare, including within the NHS, for handling medical images.

The NHS uses a range of DICOM-compliant software and systems for viewing and analysing MRI scans. These include Picture Archiving and Communication Systems (PACS) and specialized imaging software.

Examples of DICOM-compliant software used in the NHS might include systems like GE Healthcare’s Centricity, Siemens Syngo.via, or Philips IntelliSpace Portal, among others. These are integrated with hospital IT infrastructure for seamless operation.

Under the circumstances it is necessary to re-examine this lesion under a higher resolution scanner such as the TESLA 3 or better still NEG TESLA 7 Phillips wide aperture scanner as this will improve acuity of image and reduce stress induced artifacts on the scan.

A brain lesion in the limbic pathway can potentially contribute to the development of psychotic symptoms. The limbic system, which includes structures such as the hippocampus, amygdala, thalamus, hypothalamus, and parts of the prefrontal cortex, plays a critical role in regulating emotions, memory, and behaviour. Damage or dysfunction in this system can disrupt these processes and lead to symptoms often associated with psychosis, such as hallucinations, delusions, or significant disturbances in thought and emotion.

There are a number of mechanisms linking limbic lesions and psychosis

Disrupted Emotional Regulation:

Damage to the amygdala or its connections can lead to abnormalities in emotional processing, potentially contributing to the paranoia or heightened emotional responses often seen in psychosis.

Impaired Memory and Cognitive Integration:

Lesions in the hippocampus or associated structures may interfere with the proper integration of memories and reality, possibly leading to delusional thinking.

Altered Dopaminergic Pathways:

The limbic system is closely connected with dopaminergic pathways, particularly the mesolimbic pathway. Lesions could dysregulate dopamine activity, which is strongly implicated in psychotic disorders like schizophrenia.

Disconnection Syndromes:

Lesions disrupting connectivity between the limbic system and prefrontal cortex could impair judgment and reality testing, leading to psychotic symptoms.

Neuroinflammation or Secondary Effects:

Lesions causing neuroinflammation or altering the surrounding brain environment can affect nearby circuits and neurotransmitter systems involved in psychosis.

Clinical Considerations:

Location of Lesion: The specific area and extent of the damage are critical in determining the likelihood and type of symptoms.

Co-occurring Factors: Pre-existing vulnerabilities, such as genetic predisposition, previous psychiatric history, or concurrent neurochemical imbalances, may increase the risk of psychosis.

Symptom Presentation: Depending on the nature of the lesion, psychotic symptoms might manifest in ways distinct from primary psychiatric disorders like schizophrenia.

While not every lesion in the limbic pathway will result in psychotic symptoms, there is a clear neurobiological basis for how damage to this area could contribute to psychosis. Such cases would require multidisciplinary management, combining neurology, psychiatry, and possibly neuropsychology, to address both the underlying neurological damage and the resulting psychiatric symptoms

So how on earth can a CTR ‘style’ review properly take into account all of this in a short space of time? I will ask this question to Ms Pritchard as it is most important to do these tests properly under the correct scanner.

5.10 CTR to question whether person’s care and treatment could be delivered in a non hospital setting.

YES – HOME! – How comes it is so difficult for this area to provide what was previously given in the former area. In that case then it would be cheaper to offer the private physical healthcare in the community and I as mother and carer could ensure attendance at all appointments which will save a lot of money. So much has been unnecessarily spent on wrong environments of care so far. Home is the right environment and there is so much scope for care to be provided in the home environment too unlike before.

6.3 Commissioner to write a report that all involved can understand and to ensure FAMILY AND CARERS AND OTHERS WHO NEED A COPY GET THIS WITHIN TWO WEEKS.

I am still waiting for the last report from last year and minutes. Where are these documents?

I have been invited at Elizabeth’s request to attend the CTR so I should be invited at 9.00 am until 5.00 pm not just for half an hour. This is ludicrous.

The last CTR was held in a secretive manner excluding all family and therefore nothing was done correctly and then according to Elizabeth two women approached her to tell her she was to stay where she was on the ward. No way was this done properly.

I particularly wish to be included in SECTION 7.

Section 7 gives guidance on exactly how things should be organised. The time allocated is still not enough time from between 10.30 am – 3.00 pm when the actual meeting started at 9.30 am. It says very clearly “meet with person AND THEIR FAMILY”.

A new advocate needs appointing because the current firm of advocates have breached confidentiality and I have had to complain quite rightly so. I am still waiting for my response in this respect.

According to the example the CTR ends at 5.30 pm. Especially important are the following points:

Am I safe

What is my current care like

Is there a plan for my future

Do I need to be in hosplital for my care and treatment.

The Expert by Experience is NOT independent.

There should be someone independent of the Trust as the the advocate like there was in the former area where the CTR was done correctly.

There is no mention of the Neurologist or attendance by an Endocrinologist and this is extremely wrong. This means that a despite the Transforming Care Minutes no consideration is being given to physical healthcare.

To exclude a parent and carer is extremely wrong and there is no better Expert of Opinion than a parent and carer.

If parent and carer has serious concerns on physical health as well as health and safety on treatment and the way capacity assessments have undertaken as well as safeguarding and risk assessments, then these concerns should be taken on board and taken seriously instead of being ignored. This is why the CTR should be externally scrutinised as I see this as a safeguarding concern where person, their carers and parents are dismissed like rubbish when they have valid concerns and also when there are any doubts on physical health backed by scans going back to 2007. Nothing should be left to chance if there are seizures and other evident endocrine disorders. Every person should be allowed a second opinion under Martha’s Rule and just because they are held under the MHA is no excuse to ignore the urgency of such tests. The problem is that when you as a carer dare to question and ask for pathological tests then you get backlash and bullying.

In the former area Elizabeth was properly supported for the CTR and for the first time ever before we moved they were taking her physical health very seriously. All appointments were cancelled upon moving and instead, priority was to get rid of me as the NR and try and revoke the POA as they are trying to do right now. The CTR informer area was cancelled three times before it was finally arranged correctly but Elizabeth was fortunate to have the support of NAS and Access Charity who ensured there was no cheating with the CTR. Here in Lincolnshire she has no external trustworthy advocate and therefore nothing will be done fairly like last time – a waste of time and with family excluded and no legal representation I can see absolutely nothing good in this CTR ‘style’ Review. In my opinion it is a complete and utter waste of time and geared not towards the vulnerable person’s wishes but whatever Trust and Council have contrive. I do not like the way they have tried to take away her autonomy by so many capacity assessments done incorrectly. The CTR, if arranged properly, would have been a great opportunity to communicate and discuss and resolve concerns on both sides but I see this as an underhand exercise where decisions have already been made in advance and all I want to see as a mother and carer is for my daughter’s wishes to be heard and acted upon even if it is on a trial basis in terms of her coming home and that is her wish – TO COME HOME AND TO SEE HER CAT! and be close to her family. There are plenty of opportunities in the local community for her to do everything on offer under a hospital which is not a home!.

Section 9 is a tick box check list that the Chair should ensure is based on the principles and standards laid out in the CTR Policy which is clearly is not.

Section 10 is about Discharge steps and standards. It mentions “where people are assessed as lacking capacity” “Best Interest process”. That is what they have been doing all along with Lincolnshire County Council involved from the beginning and their BI assessors but today there was no doubt that Elizabeth had capacity and even when she was drugged to the hilt at a previous hospital her wishes are still the same and that is TO COME HOME.

I have not even had a carers assessment since coming to this area. In respect of the person concerned this CTR is to ensure “someone will look at my living arrangements and make sure I do not lose my housing or right to benefits while in hospital” That somebody is ME! as her Attorney “who I would like to live with? What I want from my life? She wants to come home but certain others are trying to make out I am a bad person, this is commonplace and experienced by many carers – they try to collectively say that the relationship is bad, put safeguarding in place again you and just gang up and ruin your life by trying to label you as a “perpetrator and abuser” which is why the safeguarding and risk assessments need proper external scrutinising and safeguarding works BOTH WAYS!

I remember the discharge from former area from Wales to Northampton to a care home where practically all money was taken leaving just £30 pw and no support on managing financially and I have proof that this care home run by social services, rated good allowed her to go without food at weekends. Absolutely appalling which is why I have tried to provide a home for life – an independent detached bungalow for her. None of the care institutions in the community have worked and the urban environment of London was not good so it is completely different here. Some residents in these care institutions can be loud and any noise is very triggering for Elizabeth so a bungalow in a peaceful location is what is needed and the location of home is extremely nice and suitable. I know she could settle down in this area and that there would be no problems.

TRANSFORMING CARE

I am looking at the minutes held in July 2024 of the ADULTS AND COMMUNITY WELLBEING SCRUTINY COMMITTEE and this meeting is attended by the commissioner of the CTR and same panel as the CTR. How interesting, it states:

“Many older adults MAY HAVE BEEN MISDIAGNOSED WITH MENTAL HEALTH ISSUES FOR DECADES. Data was being gathered on these individuals, especially those with learning disabilities who tend to be identified earlier.” This is a huge safeguarding issue yet I as Mother and carer who wishes for pathological tests done on abnormal findings on scans going back to 2007 am being bullied right now – that is how I see it. These minutes have identified huge nationwide safeguarding issues that NHS England need to address at each and every area. I have now identified further safeguarding issues on how CTRs are carried out incorrectly, not taking into account all the standards and principles and a CTR should be concerned with physical health and underlying conditions which are not catered for under the MHA. Properly arranged CTRs not CTR ‘style’ reviews are needed, with independent panels and properly arranged and organised like that in the former area was.

These minutes identify a serious national issue apart from this with long waiting lists for neurodevelopmental services. Waiting times for diagnosis were up to a year. Well in Elizabeth’s case it is coming up to 4 years under Lincolnshire and back to 2007 in former area who refused to look into matters properly so I as Attorney and Mother had to pay privately to confirm everything. When you advise the outcome of such private tests under the MH they are just ignored under the NHS.

“Diagnostic processes involved multiple professionals and efforts were being made to streamline this process to reduce waiting times. ” THIS IS NOT GOOD ENOUGH as lives are being put at risk.

NO autism respite provision. However Elizabeth is not being recognised as someone with autism. It is however recognised within these minutes that girls and women often masked their symptoms leading to late diagnosis.

Housing needed to be addressed. Well I have addressed that issue with a detached bungalow. All that would be needed is shared lives carers or young student professionals to knock on the door like I provided privately in a scheme in the community once. This community though is completely different to London and totally caring with lots going on and work opportunities etc.

This is so true: ONE MEASURE NOT ACHIEVING TARGET IS REGARDING CARERS SUPPORTED IN LAST 12 MONTHS. I can only go by how I have been treated and would regard this as bullying. To ban you from visiting for months on end, to take away the phone, to try to isolate and stop contact by way of capacity assessment backed by her so called advocates is very sad and that is because I am asking for pathological tests that are urgently needed but being ignored.

ADULTS AND COMMUNITY WELLBEING SCRUTINY COMMITTEE AGENDA WEDNESDAY, 4 SEPTEMBER 2024.

I have the previous minutes also but note nothing has really changed from the last minutes and now I am seeing the names of those involved and the attendees.

1
Apologies for Absence/Replacement Members
2
Declarations of Members’ Interests
3
Minutes of the meeting held on 24 July 2024
5 – 8
4
Announcements/Updates
5
Lincolnshire Safeguarding Adults Board Update
(To receive a report from Justin Hackney, Assistant Director – Adult Care and Community Wellbeing, and Richard Proctor, Independent Chair LSAB, which provides the Committee with an update on the current position of key areas of work being undertaken within the Lincolnshire Safeguarding Adults Board (LSAB))

9 – 14
6
Service Level Performance against the Corporate Performance Framework 2024-25 Quarter 1
(To recive a report from Caroline Jackson, Head of Corporate Performance, which summarises the Adult Care and Community Wellbeing Service Level Performance against the Success Framework 2024-25 for Quarter 1)
15 – 38
7
Adults and Community Wellbeing Scrutiny Committee Work Programme
(To receive a report by Simon Evans, Health Scrutiny Officer, which invites the Committee to consider its work programme)
39 – 46

Democratic Services Officer Contact Details
Name:
Tom Crofts
Direct Dial
01522 552334
E Mail Address
thomas.crofts@lincolnshire.gov.uk

Please note: for more information about any of the following please contact the Democratic Services Officer responsible for servicing this meeting

Business of the meeting

Any special arrangements
Contact details set out above.
Please note: This meeting will be broadcast live on the internet and access can be sought by accessing Agenda for Adults and Community Wellbeing Scrutiny Committee on Wednesday, 4th September, 2024, 10.00 am (moderngov.co.uk)
All papers for council meetings are available on: https://www.lincolnshire.gov.uk/council-business/search-committee-records

12 ALL AGE AUTISM STRATEGY
Consideration was given to a report and presentation introduced by Justin Hackney,
Assistant Director – Adult Care and Community Wellbeing, and presented by Catherine Keay,
Head of Commissioning for Mental Health, Learning Disabilities and Autism – NHS
Lincolnshire Integrated Care Board, which provided the Committee with an overview of
Lincolnshire’s All Age Autism Strategy. The Committee were fully guided through the
predation at appendix A of the report.
Consideration was given to the report and during the discussion the following points were
recorded:

Many older adults may have been misdiagnosed with mental health issues for
decades. Data was being gathered on these individuals, especially those with learning
disabilities, who tend to be identified earlier.

The Integrated Care Board (ICB) funded services for 16-18 year olds, but there was a
national issue with long waiting lists for neurodevelopmental services. Waiting times
for diagnosis were up to a year, locally, and up to seven years elsewhere.

Autism Champions were being rolled out across various sectors to promote reasonable
adjustments. The goal was to have these champions in every sector, including shops
and local authorities, to create autism-friendly environments.
 The Virtual Autism Hub, started in February 2024. It was involved in the children’s
diagnostic pathways and provided grants to support groups, especially in
underserved areas.

Diagnostic processes involved multiple professionals, and efforts were being made to
streamline this process to reduce waiting times.

Many autistic individuals were academically high achievers but struggled with stress
and anxiety. The Autism Hub aimed to provide support across Lincolnshire to help
these individuals develop everyday functional living skills.

There was no specialised autism respite provision. Most autistic individuals needing
social care support fell under mental health services. Creative solutions, like
organising hotel stays with care support, were being explored. The Council was also
working on gap analysis to identify needs for respite care and other services.

Increased awareness of autism had led to more referrals overall. However, girls and
women often masked their symptoms, leading to later diagnoses. Efforts were being
made to raise awareness about different presentations of autism.

Housing for autistic individuals, especially those without learning disabilities, needed
to be addressed. Ground floor accommodations were often required due to safety
concerns. The joint accommodation strategy group was working on specific needs
and bespoke tender processes for care providers.

Page 6
3
ADULTS AND COMMUNITY WELLBEING SCRUTINY COMMITTEE 24 JULY 2024
 Efforts were being made to improve data collection and understanding of prevalence
and future demand.
 There was a significant number of unemployed autistic adults. Efforts were being
made to support these individuals into employment, but there was also a need to
educate employers about hiring autistic individuals.
 There were disparities in the availability of support across different areas, with more
resources concentrated in Lincoln. Efforts were being made to address these
disparities and provide more equitable support.
RESOLVED

  1. That the report and presentation be noted, and the Committee’s support for the
    Lincolnshire All-Age Autism strategy 2023-28 be recorded.
  2. That an update on actions and improvements be reported to the Committee next year.
    13 SERVICE LEVEL PERFORMANCE AGAINST THE CORPORATE PERFORMANCE
    FRAMEWORK 2023-24 QUARTER 4
    Consideration was given to a report by Caroline Jackson, Head of Corporate Performance,
    which invited the Committee to consider the Service Level Performance against the
    Corporate Performance Framework 2023-24 Quarter 4. It was reported that 95% of
    measures were achieving or exceeding targets. One measure that was not achieving target –
    regarding carers supported in the last 12 months. It was recognised that this target was
    giving flawed indication and was scheduled needed to be reviewed in the 2024-25
    framework.
    Consideration was given to the report and during the discussion the following points were
    recorded:
     The Committee recognised that Lincolnshire was performing well when compared to
    statistical neighbours; however, improvements and progress should nonetheless
    continue to be made.
     Assurances from the Care Quality Commission were welcomed.
     It was understood that new standardised formatting for presenting data needed to be
    implemented so as to ensure effective benchmarking with other authorities.
     Client-level data was growing as a resource, which presented opportunities to inform
    and improve service delivery via a more sophisticated interrogation of data.
     The 2024-25 framework remained largely unchanged from the previous version. The
    following changes had been made:
    o PI31 – definitions had been revised.
    o PI111 – the target had been increased due to the expected expansion of the
    service.
    o PI59 – the target had been reset to give a better reflection of the service and
    meaningful intent.
    o Three additional contextual measures had been added:
    Page 7
    4
    ADULTS AND COMMUNITY WELLBEING SCRUTINY COMMITTEE
    24 JULY 2024
     PI194 – Personal wellbeing estimates – life satisfaction; happy;
    worthwhile.
     PI195 – Annual concentration of air pollution, fine particulate matter.
     PI196 – Percentage of households in an area that experience fuel
    poverty.
     Contextual measures were measured by questionnaires and survey but concerned
    subjective matters. Trends and trajectories could be garnered from these
    measurements to inform the direction of the service.
     Matters such as measuring air quality had an overlap between the two tiers of local
    government in Lincolnshire.
    RESOLVED
  3. That the report be noted, and the Committee’s satisfaction be recorded.
  4. That the 2024-25 Adult Care and Community Wellbeing Service Level Performance
    Indicators and Targets be supported.
    14 ADULTS AND COMMUNITY WELLBEING SCRUTINY COMMITTEE – WORK
    PROGRAMME

    Consideration was given to a report by Simon Evans, Health Scrutiny Officer, which invited
    the Committee to consider its planned work programme.
    No changes had been made since publication; however, it was suggested that the following
    two items be moved from the September meeting on to October:
     Day Services Update
     Director of Public Health Annual Report 2023: Follow Up
    RESOLVED
  5. That the report be noted.
  6. That the above changes be made to the work programme.
    The meeting closed at 11.30 am
    Page

Elizabeth has asked many times to work in the hospital cafe but still she has not been given the opportunity. In this area there are many opportunities with the local college and hub for autism although Elizabeth’s condition has not been identified as Autism and she is being treated as a MH patient. She is now being taken out on group leave which she enjoys however I would compare the Trust to like a religious cult who restrict and deny family contact to any parent who dares to challenge and it is not the right thing to do when that family member might have extremely valid concerns.

I do not see any members of the public invited to this scrutiny meeting but I remember once when I turned up at the former area’s scrutiny wellbeing meeting I was told it was not open to the public. I had even offered to do the minutes. Doing the minutes accurately is what is needed which is why I should be invited ALL DAY to the CTR. I wonder what the response will be if I turned up to this Council’s Scrutiny Meeting.

Now having read these minutes I think the best thing is to do the entire safeguarding openly and transparently especially as regards why I am supervised 2-1 after all this time which is putting a huge risk on the ward and their staffing levels. Safeguarding works both ways and should not just be done on a parent and carer in such an underhand manner.

The CTR is arranged for the 30th of January and I have written to NHS England about this and also asked for my invitation to be all day and for the whole thing to be rearranged properly with a completely independent panel.

The Commissioner/Chair along with another Safeguarding Professional based under the Primary Care Trust are giving the most interesting talks to Lawyers on “Challenging Families and Best Interests” How to manage challenging families!”

In answer to that – there would be no such a thing as a challenging parent and carer as if they were listened to, included and treated with respect then this would enable Trusts to work effectively in determining what is in the best interests because after all, a parent/carer is the only EXPERT BY EXPERIENCE.

I will never forget the comments of the Independent Chair of the CTR done correctly under former area. He said “The whole thing stinks!” How true! However the former area were going to send Elizabeth to the Priory in Hemel Hempstead but instead her wishes were listened to and she was allowed home. Unfortunately it is like going backwards in this area as there is no communication and families/carers are treated as though they are invisible – if this is how I am being treated there must be others. The minutes of these scrutiny meetings look like they contain same matters which have just been copied and pasted but these people are not properly safeguarding my daughter who urgently needs pathological tests after so many years of neglect from former area and current where we had hoped so much for a fresh start. Instead, it has been one hell of a nightmare and still ongoing after so very long but now disturbingly with all the attempts to revoke the POA yet again there is much going on behind everyone’s backs right now and no answer from the Public Guardian Office as yet. I will keep you all informed and these meeting should include parents and carers after all it is a scrutiny meeting.

The Conference comprised of speakers including Chair: Beverley Hitchcock, Elly Chapple, Professor Andy Bilson, Professor Luke Clements.

Trauma related practice: is a phrase increasingly used by public bodies to convey their awareness that many of those with whom they interact have experienced life changing traumas. As a rule, the traumas referred to are ‘other’ -in the sense that they are the result of adverse childhood experiences, domestic violence, mental health difficulties and so on. What is generally acknowledged is that many users of public services identify their most traumatising experiences as the way they were treated by the public bodies that they had approached for support.

Complex Systems Generated Trauma: what needs to be done: Chair: Dr Ana Laura Aiello; Mary Busk; Dr Peter Baker; Vivien Cooper OBE

Systems Generated Traumas of this kind are a daily experience for many people in contact with the social welfare system, including carers, disabled adults and disabled young people. There are a myriad of intersecting examples, but for the parents of disabled children these can include being prosecuted when their disabled child is ‘school refusing’, being refused support by children’s services when in desperate need, but then having their home inspected and their children interviewed for child protection purposes: being accused of fabricating or inducing their child’s o;;mess (FII) because they have asked for a second opinion from a health professional; being unable to access justice to gain redress for the damage done by behaviour of this kind – and so on.

About the speakers:

Ana Laura Aiello – post doctoral researcher on the Cerebra LEaP project (Leeds University) – (an innovative problem-solving project that helps families of children with brain conditions cope with the legal barriers they face. We listen to families and help them get knowledge they need to access health and social care/other support services and identify common legal preventative problems) Ana has studied law and human rights in Argentina, Spain and UK and worked for Amnesty International, Disability Rights International and CHANGE and at universities in Argentina, Spain and UK.

Beverley Hitchcock: Head of Research and Information – Cerebra

Derek Tilley: Senior Development Officer – Cerebra Legal Rights team.

Elly Chapple: Founder of #Flip The Narrative – TEDx Speaker

Luke Clements: Cerebra Professor of Law and Social Justice at the School of Law, University of Leeds

Mary Busk – worked for public/voluntary sectors and founder member of NNPCF currently working for NHS England LD and Autism Programme and spoke in a personal capacity as a family carer and mother of one disabled child.

Peter Baker – Senior Lecturer in intellectual disability at Tizard Centre, University of Kent. Has worked as a Consultant Clinical Psychologist for NHS in Sussex with leadership responsibilities for Learning Disability psychology services in E. Sussex/Brighton & Hove. He is widely published in the area of challenging behaviour and intellectual disability.

Vivien Cooper OBE – parent of young man with severe learning disabilities and Founder and CEO of Challenging Behaviour Foundation.

It was good to meet up with some of my social media contacts and see such a huge turnout of parents and carers from all over the country who have experienced the most terrible traumatic interactions with various public bodies particularly social services and an ever increasing group of us parents and carers remain in touch via discussion groups on social media to share ideas and individual negative experiences and we all agree something needs to be drastically done to change a system that is completely broken.

Our Negative Experiences:

This goes back to 2010 and even beyond this and I honestly think things have got worse. 2010 was when Elizabeth was placed in a local scheme. The placement started off well but went to pieces when a support worker left and others took over. Isolated in her individual flat where “noone knocked on her door” Elizabeth quickly declined. There was not the 24 hr support in place just members of staff who occupied one room at the top of the building and no observation through the night as to whom entered the building. I wont go into what happened but because of no security this put a vulnerable person at huge risk of abuse. That was the start of my main complaints and then you see the ugly side in terms of response. Blame was focussed on me as a parent that I visited too often however I worked full time and was on a police training course on Saturdays. CCTV cameras went missing along with all of Elizabeth’s possessions but the blame was then put on Elizabeth. She should never have been placed at this scheme and I was right to voice concerns but when you voice concerns this is when you come up against negative reactions. If they see a parent as a problem who has every justification to be concerned, quite often if a placement has not worked out then out of area solutions are funded. On huge dosage of drugs Elizabeth could not function. Health and safety/risks not followed up on and that should mean if a placement is not safe then something else needs to be provided but carers and parents are cut out.

Elizabeth has been placed in many out of area placements as far away as Wales where restrictions were in place for visitors. Following on from this private hospital was a care home where suddenly there was a poor signal and you could not get through on the phone.

Fast forward to today Elizabeth has suffered immense trauma and so have I as a parent watching her go downhill with one wrong placement after another and the guilt feeling that if we had never moved we would not be in this awful position today.

Safeguarding cutting out parents and carers is used to distance and isolate a vulnerable person. This is our current experience. It amounts to organisational abuse when someone sits writing notes constantly and you have 2-1 supervision like you are a criminal. This is going on right now and has been for the most part in the new area where we have moved.

What they do is take the phone away and basically virtually stop contact between you and the person you care for. Nothing is done correctly as far as safeguarding goes. Safeguarding should be done in an open transparent manner. If there are concerns they should include you in their meetings that go on behind your back. It is bullying to carry out safeguarding in this manner.

I have raised safeguarding myself. Elizabeth has been isolating in her room and missing meal times but then the response they give is “there is nothing we can do – she is an adult and it is up to her – we cannot force her to eat”. However bearing in mind capacity they say she has none this is surely negligence. It was not me who complained to the CQC and I think this was the reason they acted but then the same problem reoccurred.

At the moment I am totally alarmed that Elizabeth is being prescribed a combination of drugs against BNF by a locum doctor – This is the 11th one employed by an Agency. I have raised concerns and even given references to relevant research papers. Faulty prescribing can cause significant harm leading to death and injury yet many doctors just ignore this completely and carry on.

Elizabeth never had seizures before coming to this new area. The safeguarding is clearly there to protect themselves. The seizures are life threatening so it is not unreasonable that I as a mother, carer and Attorney should draw this to attention.

The treatment my daughter has had amounts to cruelty, abuse, bullying and some of the staff over the past three years have acted in a callous manner and against me Police have been used by staff calling them during my visit such as Xmas Day and then a ban lasting months and months on end by the Responsible Clinician.

All sorts of blame and accusations are thrown at you and where is this safeguarding going to end. They failed at taking away the POA but there is no means for Elizabeth ever to be discharged – a prisoner for life as they took away that under the displacement of NR and “unsuitability” claims whilst those involved in safeguarding never visited but when required had to do reports and those reports showed conditions to be squalid and negative. During this time patients had approached me in the grounds to voice their concerns and to tell me that THEY were doing the safeguarding.

Many of the parents attending this conference have had the most negative experience of social services and I was not alone. It was shocking to hear how many had experienced similarly traumatic interactions with those supposed to care. The only good experience I have ever had from social services was with my father’s social workers who instead of working against me worked together and I kept my father out of care for many years as a result.

Nothing such as the above has been my experience of social services under MH. I have never had a care act assessment done. Elizabeth has never had direct payments to enable her to have some support in the community. The reports they may are full of error and untruthfulness which has been our experience both previously and presently. There is nothing but a blame culture and in file records negative reporting against you to justify their aims.

A lot of public money could be saved not wasted if professionals worked together with families instead of against them. This worked effectively in the case of my father who had Alzheimers so I am not saying they are all bad but my experience has been the vast majority have gone out of their way to destroy family relations and cause more harm than good.

The last thing I will mention is because of my concerns I applied for police records. I know not everyone’s experience of police has been good but I actually trained with the Police and their course was excellent. I also trust the Police who have not responded in the callous way social workers have but their time has been wasted on several occasions. The police records outline the huge amount of calls Elizabeth made in desperation which is the real reason they took the phone away. Elizabeth was desperately trying to get help from the Police at a time she was according to other patients being abused by the vast majority of night staff. In certain records it stated that her calls related to her being starving hungry as because of over drugging and constant RT she isolated in her room for much of the time and the drugs were raised to double leaving her fit for nothing.

When you ask if safeguarding is in place due to excessive restrictions and raise safeguarding concerns yourself there is flat denial and refusal of a meeting that could be useful to dispel concerns (such meeting once took place behind my back ie s42 with everyone present) except the person they make out to be the perpetrator but luckily Elizabeth picked up the minutes and gave them to me. I feel like featuring them to show how vicious professionals can be behind your back.

Safeguarding should be open and transparent and not done in a biased secretive manner and because this is going on presently I am not allowed to see my daughter alone and have been deprived meaningful contact for so long I see this as extreme bullying – as one member of staff commented “it is evil to keep her from her mother on her Birthday”. It is constantly being mentioned this is being done to “keep her safe” however safe from what exactly as from her appearance Elizabeth is clearly going downhill, her face full of red marks and distressed about staff making notes during visits and most concerning is where are these notes leading and they are bound not to be pleasant. It is cruelty and abuse of power on the part of professionals to do this to a parent and carer knowing full well that this is also impacting greatly on the vulnerable patient who is clearly unhappy about all of this and then to rob her of her mental capacity in tests that were not done properly. I am talking here not just of social services but Health Boards too. It is done out of control to isolate and work towards severance of contact as I see it.

There is no greater punishment by professionals to stop a parent and carer from having contact or put enormous heavy restrictions in place and it is also detrimental to the vulnerable person to be isolated in this way. It is harmful that a team can stick together in such a way and there be no accountability. It is harmful that file notes are not accurate and contain untruthful comments. For parents and carers their lives are ruined and I would describe my life as barely worth living solely down to the way we have been treated like criminals and it is only ever one sided.


Not everyone has access to a computer or internet but I am totally inspired by my contact who is 91 having to stand up for her son who by the sounds of it has been totally misdiagnosed and denied the correct pathological tests by the NHS.

A Carer’s Story by “A” (I am using the exact words of my guest blogger as written in a letter by request)

“I have been involved with Mental health for many years as a carer for my son, even though the diagnosis is totally wrong.

My son has had nothing but persecution – stress – no life whatsoever.

Resistant to some medications.

The service should provide the resistance test, only then would patients be on the right medication.

It would save a lot of problems – also a lot of money. 

Most of all – The misery that these medications cause. They are addictive and very difficult to withdraw from.

It needs a special clinic, experienced person to make sure the withdrawal is successful. 

My son has two disabilities from the medication.

He is in a wheelchair for over 20 years suffering from TD – Tardive Dyskinesia from the medication – injury to the brain – spine (Clozapine) no dopamin in this system

Disability (Risperidone) – brain disturbance so now lacks capacity.

They only knew one thing – pills/Tablets.

The system needs to change. Put the right people in the right jobs.

Mental health destroys everything ? (The system).”

BY MY GUEST BLOGGER AGE 91 YEARS OLD