After 13+ weeks on various acute wards withdrawing from Abilify in untherapeutic, volatile environment, I was concerned at Elizabeth being placed immediately in the community. I felt she would have benefitted from a quieter environment to adjust before being thrown into a placement. Not one underlying issue was dealt with on the acute wards and she was further traumatised so at £900 per night this I felt this to be a waste of public money and I wondered why there was not specialised centres in every area as I see a lot of building/development going on at Chace Farm Hospital but it does not seem like MH is being invested in as I would like to see.
I wrote to Enfield CCG as I hoped they could get something in place in case the scheme failed a second time. I wanted Elizabeth to go somewhere specialised where she could get proper help like we provided privately but it would seem there are not many places that offer special help and I could only find two -Khiron House and The Retreat which would have required specialist funding. A year’s programme would have ensured that underlying issues would be addressed properly and Elizabeth would not be returning back to acute wards again and considering what had happened to her in a previous scheme I felt that this was the least they could do – provide the correct treatment for Elizabeth in the circumstances.
Back in 2012 Dr Bob Johnson produced a very accurate report and identified “PTSD”. More recently Dr Mukherjee also mentioned complex PTSD and possible learning disability which required assessment. The private MH professionals recognised this too and they should know as they had her stay for four months however East Enfield Recovery Team have dismissed this diagnosis in favour of “paranoid schizophrenia” and they have suddenly dropped “chronic treatment resistant” . It is obvious to the entire family that Elizabeth has PTSD with dissociation as she has retreated into being a young teenager and says things like “I’m only half grown”. I remind her she is 30 but this has no effect and she needs therapy for her condition which is quite specialist therapy.
Enfield CCG’s letter dated 31st May 2017
“NHS Enfield CCG is a commissioning organisation not a provider of services. As a commissioning organisation 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 MH issues with a GP in Enfield. This includes:
Providing treatment, care and support in line with the MHA 1983 (I hope Theresa May scraps this asap);
Developing needs assessments, care/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 with 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. (Well if this was true why wasn’t an advocate provided in the recent safeguarding?) .
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. (now this paragraph is applicable to Elizabeth).
“The MDT (Multi Disciplinary Team) supporting the individual will hold a needs assessment and review meeting with the individual and their support network, where appropriate, will agree a set of clinical outcomes and where appropriate will request funding for any ongoing specialist treatment or placement from the most appropriate statutory organisation. This could be the CCG, NHS England, Local Authority, Housing Dept/and/or Education Service. This would be dependent upon clinical outcomes and assessment of need, taking into consideration the capacity of the individual, best interest of the individual (Duty of Care) and their needs/aspirations/recovery goals.”
Family or carers not included. Need for specialist treatment for complex PTSD unavailable in my area has been ignored. I am disappointed with the letter by Deborah McBeal (Deputy Chief Officer).
Conclusion appears to have been made that the supported living scheme is most appropriate, despite this failing two weeks ago and Elizabeth sent back to ward. According to Mary Sexton (Executive Director of Nursing, Quality and Governance) the scheme are supposed now to provide qualified nurses however I do not think this is the case. The scheme have a supply of the highly addictive drug Lorazepam obtained for Elizabeth and their support workers are giving this to Elizabeth twice daily which may make her feel better than she did on anti-psychotics but my concern is this drug is highly addictive. I therefore made her aware of this fact today. This drug is being given by support workers, not qualified nurses and I said to the support worker today that it was unacceptable to give this drug twice-daily basis the way they are doing. They should keep a supply of it in case of need and offer very occasionally as a last resort but it would seem that it is the easy solution to just drug her with something else and just like in hospitals control them and I think this is terrible. It is really awful to become addicted to such a drug and after coming off anti-psychotics after 11 years she is bound to feel pain and discomfort. I would prefer natural solutions to this not yet more dangerous chemicals.
I wrote to the Commissioners as it had been identified years ago Elizabeth needs were “intensive trauma therapy” for PTSD but this had never been provided. The care on the acute ward everyone agreed this unsuitable but now I do not think the scheme is either if they are regularly drugging her with highly addictive lorazepam.
I was advised East Enfield Locality MH Team (Service Manager George Benyure and Consultant Dr Basit Hussain) are those supporting Elizabeth but look at the support we have had in the past whilst Elizabeth was at home – we had no support and we requested direct payments. Elizabeth was unstable on Abilify but nothing was done about it. Whilst at another placement she was taken by 3 members of staff to Safeguarding Meetings consisting of 9 professionals with the intention of destroying me so I can see from the contents of the minutes. This was not about care and they even suggested that Elizabeth found Clozapine helpful which was FAR FROM TRUE. I have so many witnesses who will tell you that this talc and aspartame drug was actually causing so many problems, the most serious being loss of control of her tongue. Cygnet Stevenage raised the Abilify to 20mg just before release making her unstable. This terrible drug caused shocking adverse reaction. It is hard to have faith when you look at the care plan and see “paranoid schizophrenia repeated time after time and they have missed out huge chunks of the file and reports. This goes against duty of care and best interest if they do not look further into complex PTSD and learning disability and ensure that the correct therapy is given.
Duty of Care and Best Interest:
Dr Mukherjee (Clinical Psychologist) has correctly identified complex PTSD and possible learning disability. This would tie in 100% with the private MH professionals who know Elizabeth as they had her stay with them for four months. I would agree with Dr Mukherjee. However the problem is that the East Enfield Locality MH Team in their last care assessment put nothing but “paranoid schizophrenia” and huge chunks of the file records had been ignored. All these years – 11 years Elizabeth has been misdiagnosed but the team just stick with “paranoid schizophrenia”. I have not seen the latest care plan but would not be surprised if this remains the same as I it would seem that they do not wish to provide the therapeutic care that is so much needed. Unfortunately we as a family do not have faith in a Support team who have failed to offer correct treatment for the complex PTSD (if someone has suffered extensive abuse like Elizabeth at a previous scheme in the community) this should be the correct diagnosis. Instead they stick to paranoid schizophrenia missing out huge chunks of the file that contradicts this. Instead of therapy Elizabeth has been drugged extensively over 11 years with enormous quantities of mind altering drugs. Abilify continued to be prescribed despite a serious incident whilst on it – If we had not taken her away I doubt whether this “treatment” regime would have ever changed. Manufacturer’s instructions clearly state “for Bi Polar and Schizophrenia” NOT PTSD and also for up to 12 weeks only. Why do Doctors just ignore this? I as a mother look into things properly and check the ingredients, the manufacturers instructions etc. We sent her away to have proper care staying with a wonderful team of professionals from “Working to Recovery who worked with her on underlying issues that had never been dealt with before and they were getting somewhere too. All these years she’s had the wrong treatment/wrong label – no wonder she gets angry but this could also be because of injury and now I would like every physical health check done on her.
The name Peppa Aubyn (Head of MH Commissioning) is mentioned and it is suggested I contact her. Well I have done twice and I have not had the courtesy of a reply to my emails.
So it is a waste of time writing like I’ve done to the CCG and getting a response referring me to the support team of East Enfield Recovery Team who also just like Peppa Aubyn do not bother to respond to emails but yet they had time to attend safeguarding meetings which were all about me accusing me of abusing my daughter and I would rather be judged by the world than these people who know nothing about my family whatsoever.
“when asked Elizabeth said that clozapine was helpful” OH NO SHE DID NOT – I showed her these comments in the shocking minutes which I have copies of.
What I would have liked to see:
Somewhere like The Retreat – beautiful grounds where they could work on trauma extensively and deal with the effects of the abuse that has caused Elizabeth to retreat to being a young teenager in her mind. Somewhere where they deal with dissociation as Elizabeth has blocked painful memories. Psychotherapy to get to the root of the problem and to look at the reasons for her actions. Proper counselling needs to be given and therapy as you cannot drug someone and heal their pain for trauma/abuse. EMDR is supposed to be good. There is nowhere in my local area that provides the right kind of care and if someone has flashbacks then this is quite negligent to just place that person into the community without proper treatment.
The scheme is a nice house. It has a nice garden and is in a nice area close to Doctor/Dentist and facilities.
Whilst I know Elizabeth would prefer to be close to her family at the same time, she could make a complete recovery if she is given the right care on a long term programme but not in a prison environment and as something bad has happened to her under the care of the local area previously, then I feel this should be provided.
The scheme has a no tolerance policy -they cannot possibly deal with any underlying issues there. Nevertheless I am pleased she is out of hospital and it has been so awful seeing her back on the acute wards again.
East Locality MH Team is managed by George Benyure who was present at the recent safeguarding along with care coordinator as well as Dr Basit Hussain Consultant.
I AM MOST CONCERNED:
Today I have found out Lorazepam is being offered to Elizabeth twice daily and I feel should be given sparingly in case of extreme need not regularly like this. This is completely wrong. This drug is highly addictive. There is no obligation for anyone to have to take drugs in the community but I have told Elizabeth that if she is agitated only then should she take one of these drugs. It is all too easy to drug someone up – it is not the answer and I was told qualified nurses would be working with Elizabeth and a more experienced psychologist. I do not think that this is the case although Elizabeth likes the support worker concerned.
I have also asked for Elizabeth to be included in the auto-immune research of Professor Belinda Lennox regarding antibodies attacking the immune system. I would like everything checked out thoroughly as regards Elizabeth’s physical health.