We’ve been trying for so long to get the correct care/environment for Elizabeth who is multiply diagnosed. Elizabeth recently gave me consent to deal with the local Commissioning Group. I have received a response written by Deborah McBeal who is Deputy Chief Officer:
“I am sorry to hear of your concerns etc”….. she goes on to explain about procedures for commissioning specialist therapeutic treatment/intensive care/support services in the community and how the procedure works:
“NHS Enfield CCG is a commissioning organisation, not a provider of services. We commission our specialist mental health provider, Barnet Enfield and Haringey MH Trust (BEHMHT) to provide specialist treatment, care and support and treatment for people with mental health issues with a GP in Enfield. This includes:
- Providing treatment, care and support in line with the MH Act 1983.
- Developing needs assessments, care and support plans and risk management plans with individuals and their support network, where appropriate.
- Providing care coordination, support and reviews in line with Care Programme Approach (CPA) and other statutory responsibilities.
- Providing evidenced based treatment, care, support and wellbeing interventions in line within individual care and support plans that are safe, person centred and clinically appropriate.
- Ensuring that patients have access to appropriate advocacy, information, guidance and support. More information on BEHMHT website http://www.beh-mht.nhs.uk.
COMMENTS BELOW WOULD APPLY TO ELIZABETH:
“From time to time people with more complex needs will require greater intensive therapy or treatment than BEHMHT is able to provide under current commissioning arrangements.”
The Multi-Disciplinary (MDT) supporting the individual will hold a needs assessment and review meeting with the individual and their support network where appropriate to determine what type of care and support is needed and what type of setting is appropriate – ie rehab inpatient or supported accommodation in the community. The MDT working with the individual and their support network will agree a set of clinical outcomes and where appropriate request funding for any ongoing specialist treatment or placement from the most appropriate statutory organisation which could be CCG, NHS England, Local Authority, Housing Dept/Education Service. This would be dependant upon clinical outcomes and assessment of need, taking into consideration capacity of the individual, best interest of the individual (Duty of Care) their needs/aspirations/recovery goals.”
So it is no use contacting the Commissioning group as everything is organised locally through the Multi-Disciplinary Team (MDT) who not long ago were all sitting round a table – 9 of them doing safeguarding where I was centre of attention.
The Support Team of Elizabeth is called East Locality Mental Health Team and at the time Elizabeth was on Suffolk Ward Chase Farm Hospital.
The Service Manager is George Benyure. Care Coordinator – Bola Quadri.
Consultant is Dr Basit Hussain
“I would encourage you to discuss placement options with your daughter and MDT supporting her” Well I doubt that could ever be achieved judging by the contents of the Safeguarding Minutes which are truly shocking. Glad I obtained these to see what goes on in such meetings and it is not about care that is for sure.
“The CCG would be unable to commission or fund a placement without a clinical recommendation which would need to come through the BEHMHT MDT supporting your daughter as part of the needs assessment and review process”.
That says it all. In my case if the MDT dislike you to such an extent as documented in the minutes without inviting you along to join in the discussion then no fair outcome can ever hope to be achieved. If I ever needed help in my local area I do not feel I have anyone to turn to.
Whenever I’ve written or telephoned this local support team I have had no response to my emails. As documented in the safeguarding minutes I can see why as my correspondence it was requested by the Deputy Leader of Qualilty that all correspondence by me be redirected to her. So this is why no one has responded and the response we have had from the Deputy Leader of Quality is “we have to think of resourcing” – responding to my emails being costly and time consuming. It is not the first time this approach has been used and this is why nothing is done satisfactorily apart from the most recent investigation which has been dealt with properly but not by them. They have tried and failed to label me “vexatious complainant” but I have had good cause to complain and communication is the most important thing and it is not good practise to ignore emails without any response.
If there was an open and honest system such as Open Dialogue none of this would occur.
WHAT HAS RECENTLY BEEN PROVIDED:
I tried to tell them please do not place Elizabeth immediately in the community following her time on the acute wards but no one listened. They just went ahead. Elizabeth was not ready and needed time to adjust – I bet this was the cheapest option to place her in a local scheme where I was assured anger management/counselling etc could be addressed better than in a hospital environment. An acute ward was the wrong environment costing £900 per night over a period of about 15 weeks. She was allowed to be drug free and during this time, several attempts made to place her in the community which I kept saying was wrong but no one listened. I was told by the Consultant at Trent Ward the only option was either the Recovery House in Palmers Green or supportive housing. This just did not work out. I asked whether he could apply for specialist funding for The Retreat or Khiron House where they have specific specialist treatment such as EMDR/psychotherapy. Elizabeth spotted herself a Neuro Rehab Unit at Edgware Hospital and asked if she could go there. So I put in a request – it was Elizabeth not me who was asking but nothing came of this at all.
Now currently what is being provided is the most expensive care of all in a PICU which Dr Shakeel Ahmad himself admitted is completely the wrong environment for Elizabeth and none of us are happy as it is far away from home. Treatment is forced on a Section 2 and no assessments have yet been carried out as far as I know. Elizabeth has been threatened if she does not take drugs they will forcibly inject her. I wonder how specialised their assessment is on Aspergers/learning disability and do they have extensive knowledge on this. The local team have refused for so long to budge on their idea of diagnosis mentioned throughout the recent care plan by someone who would appear to be a newcomer, yet the care coordinator has stuck with this and it misses out huge chunks of the files that state Aspergers, PTSD by local professionals. This is so bad when someone doesn’t get things right and this can lead to mistakes in care and treatment. I have kept extensive records and have the names of the Doctors/professionals who say otherwise and not paranoid schizophrenia.
HUNTERCOMBE HOSPITAL – LOWER RICHMOND WARD
This must be a very expensive facility that Enfield is paying for not only for Elizabeth but others from the local area. I think they are supposed to give assessments and say they specialise in learning disability and brain injury cases too. Past scans have not shown that Elizabeth has got brain injury however she has been on maximum levels of the drugs in the past and when she came off them she was suffering from chronic pain yet placed in the community and twice ended up back on the local ward where underlying issues were not addressed in all those 15 weeks of her being there. Elizabeth has only been at Huntercombe Roehampton for one week but already she is being drugged up to the extent she talks in a slurred manner like we have never seen before. She is being prescribed three times a day Chlorpromazine and Rispiredon – the latter, prescribed a drug that Enfield MH had to take her off (Rispiriedon) because it caused a rash together with Chlorpromazine. They are giving her too much medication as her eyes are like slits and her voice slurred. The facility is a far from home – interior better than Suffolk Ward – probably food is nicer too but Elizabeth was still hungry when I arrived yesterday and was keen to see what I had brought her. She told me that she spent most time asleep as the drugs made her constantly tired. When I visited last week she had to lie down – could hardly walk but was able to tell me a bit about her treatment and how if you refuse the tablets you get a choice – either you take them or you are forcibly injected. She has recently been moved from Upper Richmond Ward to Lower Richmond Ward. I have been told by someone that there is only one Consultant in charge of all the wards there who I assume to be Dr Shakeel Ahmad. There are two psychiatrists namely Dr Mike Alcock and Dr Agron Ramadani but none are on duty at the weekend.
When I spoke to Dr Shakeel Ahmad last week I told him of my concerns regarding medication for my daughter and pointed out to him that the Rispiriedon caused a bad reaction as stated in the files. I emphasised that Elizabeth cannot metabolise anti-psychotic drugs and I have sent him the P450 liver enzyme tests. My concerns are that she should be on the minimal dosage but although he agreed to lower the dosage I saw no change when I visited her and she looked terrible. I got a call from Elizabeth on Friday last that she had a disagreement with a nurse and they brought her four tablets to take as a result so I believe my daughter is being overdrugged looking by at the state of her which saddens me and therefore I do not think this is the right place for her to be not only for that reason but it be so costly to provide by my local area of Enfield. I am also worried about the safety of what they are doing as her appearance does not look good at all. Elizabeth said last week “look what they are doing to me, Mum”. I appreciated she needed something to calm her down but I pointed out to the Consultant “how can she benefit from any therapy if she is so drugged up” With her eyes barely open and the way she is speaking we are concerned for her wellbeing. I remember when Elizabeth came back from Australia I tried to get her ongoing therapy she needed but we had no help in the community. The private MH professionals thought she had PTSD/poss learning disability but the local team refuse to budge on “paranoid schizophrenia” which we all feel is wrong and this has led to wrong treatment. It would have been cheaper if support could have been provided through direct payments so I could employ carers of Elizabeth’s choice to help her. We had never seen look so good back in December 2016 when she came back home after 4 months of being in the right environment and receiving the correct care. The cost of this -a fraction compared with cost of an expensive facility such as this hospital.
I am unhappy as I feel a restrictive ward is no place to get well. The right kind of environment is peaceful, natural, animals, fresh food, no pressure, no emphasis on meetings and progress/outcomes. Dr Shakeel Ahmad even agreed with me on this and this is why we want her out of there as it is not the right environment for her to get well. another hospital like The Retreat would offer less restrictive care, would not be pushing drugs at huge quantities and offer the correct programme of counselling suitable to her needs.
If she was to return to the community what suitable facility could be provided – certainly not a shared house like last time. Certainly not a structured approach of meetings and progress etc.
The owner of the last scheme does not want her back – she could have been thrown out on the street if Police had not argued for some time. They could not deal with a case of complex PTSD and Elizabeth says people fail to understand her. A risk assessment was carried out and it was decided this was suitable but I knew things would not work.
After so long on acute wards a much quieter, peaceful environment was needed, not one where pressures such as meetings/assessments/clinical outcomes are expected. If Elizabeth was left alone without any pressure perhaps she could recover.
I know of some people who may be interested in working with Elizabeth who have known her since a child. If only they could be involved if she was to come back to the local area. The arrangement of Direct Payments worked well for my father for so many years and kept him out of going into a care home. My father had day centre to go to each day, transport to pick him up, Crossroads to sit with him for two hours – direct payments covered a carer to sleep in over night, get breakfast ready and give medication until the early morning carer arrived from Jays Homecare. Occasionally my father would go in to a care home for a couple of weeks or so respite. All I had to do was keep the paperwork and pay the wages of the people I employed. Whoever thought of Direct Payments came up with a fantastic idea which allows choice and independence to people who would otherwise be in a care home and restricted. I had a good relationship with social services from Enfield Older Persons Team who were brilliant. My relationship with the MH team is not good and they do not like me as I have complained but my father truly benefitted from having direct payments and he had Alzheimers. He liked seeing the same carers just like Elizabeth likes to be familiar with people. I think Elizabeth could eventually live in the community in her own place with maybe just one person staying overnight and support workers of her choice to assist during the day as and when needed. The last thing she needs is a structured programme and pressure put on her. We have been refused Direct Payments by the East Locality MH Team and perhaps they should now reconsider and bear in mind public funding and to give Elizabeth the choice to appoint who she feels comfortable with. She should have an advocate to help her decide this and explain to her about direct payments but no advocate has been provided as per her best interests. However now Elizabeth has got no end of people who wish to act as advocate and this is not being funded by Local Authorities.
WHAT I’D LIKE TO SEE:
I think she should be first and foremost be properly assessed by Experts on learning disability as guidelines state:
7.10 LEARNING DISABILITIES
“If it appears the detained person may have a learning disability, every effort must be made to have that person assessed by a specialist in Learning Disability or to seek specialist advice if other services are unable to attend, unless this would lead to unacceptable delays in completing the assessment.” It is ridiculous how some people affected by learning disabilities are placed in ATUS (Assessment Treatment Units) for 10-20 years. There is no way on earth I want this for my daughter Elizabeth especially in a place like Huntercombe where they are giving too much medication as seen by her appearance.
If someone has suffered terrible abuse then they would have complex PTSD and this too needs consideration in order that correct treatment be given. Antipsychotics are not recommended under NICE Guidelines for PTSD but psychotherapy and EMDR have proven to be beneficial.
SECONDLY: The wrong hospital environment is a PICU or acute ward but a specialist place like The Retreat or Khiron House for complex PTSD/therapy on a year long programme would be better. A place where Elizabeth is not being over-drugged but on the minimal amount of medication and at The Retreat I have heard they have a very good approach. I feel that if she was on their long term programme she would be able to cope well with living in the community.
Other members of family live in Norfolk/Cambridge and I feel that these areas should likewise be considered. In Cambridge she could get a proper assessment for Aspergers. In Norfolk – a much more peaceful environment by the coast might be more suitable but of course all this should be discussed with Elizabeth although emphasis should be on what is going to work in order to avoid return to wards such as Suffolk, Trent, Huntercombe and Cygnet Hospitals when if investment was made in the local area to provide specialist centre for complex PTSD and ongoing therapy much money could be saved rather than spending £12500 per week on private facilities and £900 per night on acute wards.