I thought long and hard before writing this post, as I did not want it to appear to condone in any way, the atrocity of life and death in an Adult Treatment Unit. Atrocities like the 7 year ‘treatment’ of 18 year old Stephanie Bincliffe in an Huntercombe ATU, paid £1761 a day to lock and […]
Source: COMMENTS BY FINOLA MOSS
I have received a letter in response to our complaint relating to safeguarding. The letter of apology is written by Dionne Grant Statutory Complaints Manager.
There was someone else that should have received apology but it was suggested that this person contacts the relevant organisation directly.
I have requested copies of the other minutes and copy of a particular letter written by a Consultant Psychiatrist.
“Mental health services in Enfield are integrated with and managed by Barnet Enfield and Haringey MH Trust which is a separate organisation from the Council. You will need to liaise directly with them regarding copies of information required.
“What measures are in place to change safeguarding procedures?”
“discussions are now taking place between both Council and Trust Head of Safeguarding.
They disagree that people involved should not be involved in future safeguarding and state as part of improving our service “the professionals involved have reflected on our experience which will help develop their practice as they continue to deal with safeguarding issues.”
Concerns about Placement:
“You need to contact the external provider directly. The Trust is aware of the concerns and will discuss these matters directly. ” As yet no discussions have taken place regarding the placement.
Reference was made to the joint complainant GH “The Trust is aware and will consider matters accordingly. A joint apology has been given on behalf of both Council and Trust. This covers all 0parties involved so there would not be further contact from individual officers on this same matter.”
Concerns on Medication
“The Trust is aware of your concerns and will liaise directly with you on matters”.
The latest drug is once again Rispiriedon being prescribed by Huntercombe which according to early files Elizabeth had to be taken off due to allergic reaction.
If only Elizabeth was in a peaceful environment away from London such as The Retreat and receiving the right counselling then there is hope she could get well. It is worth trying something completely different away from this area such as Camphill Community Trust. The London environment may well not be the right environment for Elizabeth as going away to a peaceful natural environment was the answer previously and reason she came back so well.
We will keep trying to find out when we can pick up the possessions and what is going on as regards the scheme in the community as this is clearly not suitable if staff could not get on with my daughter and she was not happy there. Now is the time to look alternative solutions. I have no objection to Elizabeth going away from this area if only she is receiving the correct care and not being forcibly drugged and her need for the right kind of therapy addressed.
Elizabeth has retained happy memories of her time away with private MH professionals through “Working to Recovery” and at art group at Huntercombe she is drawing upon those memories of beach, surfing, her time travelling and staying in Scotland. I am so happy that we provided this wonderful care and that at least she has some happy memories in her life. A hospital environment such as Huntercombe PICU and other similar places should not be used to hold patients for many years but only for short term periods.
The 7 Days of Action Campaign is great news as it highlights the injustice going on in the UK towards those with learning disabilities, how they are being held all over the country like prisoners, a long distance away from families and friends. It is disgusting that the Government ignores does nothing to stop this from going on. Vast funding (by public money) in the hands of local areas goes to private hospitals and care homes instead of local services and improvement to the NHS care and services – all geared to making profit and not providing the right kind of care needed – a waste of money.
Sadly Elizabeth is currently held in an assessment treatment private hospital called Huntercombe based in Roehampton, a fair distance from where we live. I was delighted to be contacted by the Guardian journalist currently doing an article on the effects on vulnerable people and carers of being sent a long distance away from home. I told her about the time Elizabeth was sent to Cambian in Wales from London. I am currently putting others in touch with her. The journalist was most interested to hear what I had to say about care in my local area of ENFIELD.
Elizabeth has been various institutions/care homes, and came out worse than ever. What a waste of public money. When we had her home for two years she refused to go out the suffering from Agoraphobia. The best thing we did was to send her away to stay with wonderful MH professionals (who saw no sign of psychosis) however Elizabeth has anger problems because of her treatment and what happened to her which has never been addressed before but suppressed through vast amounts of drugs. The private MH professionals went a long way to help her and she had psychotherapy, art therapy and music therapy. Elizabeth was able to communicate more effectively when she came home as a result of their treatment. She came back well, better than we’d ever seen her, wanting a job, making her own appointments, cooking, cleaning, shopping and even trying to budget. When it was confirmed what we had thought all along I desperately tried to get a bit of support from my local area Enfield Learning Disability Centre but were turned away. Enfield East Recovery Team have refused to budge on “paranoid schizophrenia treatment resistant” . Elizabeth’s recent care plan missed huge chunks of the files where it is documented by various doctors that she had developmental/ Disability/Aspergers.” These doctors are:
Professor Linden – developmental
Dr Christodolou – learning disability
Dr Satinda Sahota – Aspergers
Dr Bob Johnson – 2013 – PTSD
Private MH professionals who had Elizabeth four months thought she had a learning/developmental disability as well as complex PTSD as Elizabeth started to talk about what happened to her at Moti Villa – local scheme in the community
Dr Mukherjee – Clinical Psychologist – Chase Farm Hospital – did not deny the possibility of complex PTSD or learning disability, unlike others in the team.
Over the past 11 years Enfield have not budged on a mental health diagnosis and it is no wonder Elizabeth has gone downhill and not got better. We have proven over a short period of time at a fraction of the cost of these private institutions and care homes that with the right care, environment and approach someone can improve and get well to the point of wanting a job but sadly there is no support from the local area (Enfield) and it is no wonder why when they commission private facilities at vast sums of public money, instead of improving things locally and offer what is needed most in terms of care and services.
Also a lot of money has been wasted on social services taking to court someone who disagrees and dares to challenge the “care” which has been mostly huge levels of mind altering drugs which again have done nothing for my daughter except harm. You cant drug someone who has suffered extensive abuse under one of their provided schemes in the community – memories will not fade but what I think they have tried to do is to cover this all up by giving her maximum levels of drugs in the past in order that she could not talk about it. Well now everything is out in the open and both close family and friends alike all dispute the diagnosis of “paranoid schizophrenia treatment resistant”.
I am saddened to see under 7 Days of Action that there are vulnerable people who have been imprisoned for as long 16 years and I know of other cases too. They are denied basic human rights and drugged up, some to the point where they become so disabled they cannot live independently. Families are ignored once under the control of care homes etc. They just try to discourage by restricting visiting/leave/sever contact/displacement because vast sums of money are being made and if abuse is going on it makes it easier to cover up if people are not visiting from outside.
It is easy to become stuck in the system especially if there is no outside interest -no family or friends as witnesses. The seems to be no accountability.
Huntercombe Hospital Roehampton:
Dr Shakeel Ahmad – RC; Dr Smart; Dr Ramdani
Elizabeth has not been there long on the PICU Lower Richmond Ward and I have spoken to Dr Ahmad who agreed with everything I said. He agreed the facility and environment was wrong but ENFIELD are paying for this and there is more than one person from Enfield that has been sent there.
Elizabeth was traumatised when she first arrived staring blankly into space. I saw her briefly and did not realise until I got there that this was a secure facility. I found the journey awkward and had spent money on a cab as I am not familiar with the area. They allowed me to see her briefly for just half an hour without prior appointment – I just dropped some things to her and I was saddened that this facility was just like Cygnet and Cambian. You have to book in advance for a room to visit.
Elizabeth was distressed by noise on the ward and was not allowed her phone at first- policy is no phones allowed but they have compromised on as I made such a fuss about it. You can easily be shut off from the outside world without a phone and there is no privacy using the patient’s phone. When I originally had to phone the patient’s phone Elizabeth complained of not being able to hear me and also it was awkward to get through to her and expensive as if you are kept holding on for a long time using a mobile phone.
I would say that it is slightly better in terms of the fact that when visiting a member of staff did not stay in the same room or stand over you listening to every word of conversation. At Cygnet Beckton the visitor’s room door was left open whilst a member of staff sat outside listening to every word of your conversation.
My second visit to Elizabeth was in the evening after work. Again I got a cab part of the way due to time restrictions for visiting. Elizabeth could hardly see out of her eyes, was having to lie down on the settee and could barely walk. She said “look what they are doing to me mum”. It was sad to see my daughter looking so drugged up and I asked what she was on. To my dismay it was something like 2mg Clonazepam three times a day and 2mg Rispiriedon three times a day. I was told this is not a big dosage but the effects were astonishing when Elizabeth could not speak hardly and was slurring her words it was hard to understand what she was saying. I was so upset that I asked for a call from Dr Ahmad and obtained his email address. He did ring me and agreed to reduce the drug.
The third visit to Elizabeth was the weekend where again I could see no improvement and Elizabeth choked badly on food and was ill. This time staff were not outside the visitors room which was situated in the main area of the ward. Elizabeth still could not see out of her eyes and came in with eyes shut as she had been asleep prior to my visit.
Various close friends of the family have also been to visit Elizabeth and have been concerned about her appearance but she has been thrilled by their visits. You are only allowed to visit for 1 hour.
Elizabeth has not been out in the surrounding area. I am saddened by this as she was treated like a normal human being by the private MH professionals and allowed out and about in France and Australia on her own and also in Edgware from Trent Ward she was to explore the local area and there were no problems. Here at Huntercombe she is held just like a prisoner. There is only a small garden area outside the ward combined with smoking area which is not good.
Must to my dismay this small area has a smoking area too and in that environment it is easy to copy the bad habits of others so Elizabeth went in a non-smoker and now she is wanting to smoke – I am appalled and I have spoken my mind about this to Huntercombe. This is one of the main reasons I do not want Elizabeth to remain in this private facility.
Elizabeth says the food is quite nice but she is always hungry. To begin with she spent most of her time asleep knocked out by the drugs being given to her and I thought that maybe this was the reason she was so hungry as she could have been missing meals.
Whilst Elizabeth was on Suffolk Ward she was ordering takeaways to the point that the Bank have put a stop on her spending. So I am going to show her a copy of her statement and check everything with her today to see if any entries could be wrong.
As experienced previously it is not always easy to get through on the phones. Staff are busy and pushed for time. Thank goodness they have now allowed Elizabeth to have a phone – maybe it is their office phone where they have inserted the contract chip. I will have a look when I visit next.
WHY AM I HERE MUM?
Sadly anyone who presents with any kind of challenging behaviour is thrown into an institution such as this where they are consequently drugged. There is therapy such as art/music and chance of one to one so I have heard. There is advocacy available but you have to ask for these things. There is the chance to see church representatives/priests etc and this is good. However the environment is not good amongst other patients presenting with challenging behaviour.
WHAT IS BAD ABOUT CYGNET, CAMBIAN, HUNTERCOMBE AND OTHER SIMILAR FACILITIES?
It is the whole environment that is wrong. If patients are cooped up all day, not allowed out, then it is no wonder they act adversely and the reason they are drugged so much is simply to control them. If someone is so drugged up then they cannot possibly benefit from what is good on offer on some of these wards. I am appalled by the smoking environment unlike NHS. I feel that the environment is like prison and very restrictive. You cannot just turn up – you have to book a room and if that room is unavailable then you cannot visit. Elizabeth has been placed by Enfield in similar facilities in the past and they have not helped her at all. They have failed to assess her properly – they have failed to offer the right treatment and all they have done is hold her like a prisoner.
The only way to get out of these prison-like facilities is to challenge the Section 2 which is 28 days because once you go on to a Section 3 it is very hard to get out. I know people who are stuck on a section 3 that goes on for many years. It is extremely profitable for hospitals to keep hold of someone and they are not going to get better in that environment. If Elizabeth is to be held under Section then this facility is totally wrong and I have identified The Retreat and Khiron House that offer the correct treatment for people who have been extensively abused like Elizabeth has under care itself and as documented in the files going back to 2010.
So Elizabeth’s tribunal is on Monday at 9.00 am. Originally Elizabeth appointed a firm of solicitors but quite often a hospital will put forward their own recommendations of solicitors from their lists. They like the advocates who are funded by the hospital are supposed to be independent but I do not believe that they are. Unfortunately much to my dismay I heard that Elizabeth was persuaded to go with another firm of solicitors recommended by Huntercombe in place of those she originally appointed. I bet you that this appeal is not going to be successful. When I enquired I found out that there are people attending this important meeting on Monday – presumably those attached to the local area of ENFIELD who we have been trying to get hold of in order to retrieve Elizabeth’s possessions from the scheme run by Simicks / Baytree Care. None of them have responded to me or anyone in the family. I do not think the tribunal will go in her favour. That leaves me as NR to contest the section and I know that Elizabeth is not happy there due to the noisy volatile environment – there is another patient who she feels threatened by – she is a long distance away from family and friends. It is costly to challenge a section as NR if you have assets ie your home then you are not entitled to legal aid and that is how people can become stuck in the system for up to 15 years. Just think how much public money is being wasted and those vulnerable people are not going to get better in a prison-like facility or care home that also treats them like prisoners. Take Phoenix House Stepping Stones Northampton “she must be reminded to manage her money (£30 pw) better as she had no food at the weekend”. Many places such as this take a hard line approach and think it is right to be cruel to be kind in terms of getting someone to manage by not ensuring that person has decent food, by not offering the right kind of support and most of all by not offering kindness but by taking a harsh/tough approach.
THE PROBLEM CARE IN THE COMMUNITY/CARE HOMES
Elizabeth was discharged from Chase Farm Hospital Enfield to a privately owned scheme that had no running water or toilet facilities in complete breach of Health and Safety. I’ve no idea who carried out the health and safety risk assessment but I would say this is negligent to place someone in the community who has had no proper treatment and held on acute wards for up to 15 weeks – drug free but no issues had been addressed as there is just one psychologist shared between so many wards in Enfield so I understand – please correct me if I am wrong here. It would seem like vast sums of money are spent on Cygnet, Huntercombe and other similar private hospitals whilst ignoring the need to provide much needed services and facilities in the local area offering the right kind of care. That results in vulnerable people not receiving the right kind of treatment and being sent far away from their families and held prisoner for many years. How can this be allowed to go on in a civilised country?
I am delighted that the Guardian is going to feature this and that there is a campaign called 7 Days of Action which I would thoroughly support. I am more than happy to be included in any newspaper features or even appear on TV to highlight the need for change in the UK as I have proven what kind of care and environment can work. When someone is placed in a care home or supported living scheme that has complex PTSD quite often they are placed amongst people who do not know how to deal with the distress from that person. It is clear that Elizabeth was not happy and did not bond with majority of staff at her most recent scheme (apart from one care support worker). It is not always qualifications that count but knowing when to step back and how to deal with situations. With a no nonsense policy relating to abuse – if someone presents with challenging behaviour and staff do not know how to deal with this situation then that person ends up back and forth in hospitals because staff just call the Police. They then try to throw someone out on the street homeless yet they took that person in without consideration in the first place. It is commonsense that you cannot just dump someone in the community and provide the cheapest option but now Enfield are paying for both expensive facility PICU and empty scheme as a result.
What upset Elizabeth: “no one understands me” – “I could hear them talking about me behind my back stating ………….said I was not doing too well”. Putting pressure on that person to attend meetings and progress reports is not good. If she had just been left alone she could have settled. Sadly the really good support worker who knew how to deal with Elizabeth was not at the scheme when Elizabeth was released from hospital. I understand that Elizabeth has gone out of her way on her own accord to find out where that good support worker is.
Elizabeth still has possessions at the scheme but we have not been advised what is going on and no one is responding to us. We want to call round and collect the possessions but this needs to be arranged. The care coordinator and her Manager are based at 58-60 Silver Street Enfield and the team is called Enfield East Recovery Team. It does not take a minute to pick up the phone to say what is happening right now but this team have ignored everyone.
The reason the scheme did not work:
The majority of staff did not bond or understand Elizabeth – we feel she has Aspergers not a mental health condition and other professionals have felt the same way.
Elizabeth did not have the right kind of therapy. Psychotherapy/anger management should have been provided for her to attend outside of the scheme.
Isolation in terms of the fact she had made friends with people on the ward but in the community she was isolated and surrounded by staff not friends.
Chronic pain due to being off drugs for over 100 days – no one understands the effects of withdrawal and tiredness and they think that the answer is more drugs which is totally wrong.
I recently stayed overnight prior to Elizabeth’s admission back into hospital again. I stayed the weekend and witnessed her distress and unhappiness. If a proper risk/health and safety assessment had been carried out in the first place then staff would have seen that this is not a suitable place for Elizabeth at this moment in time- a scheme that has zero tolerance of any challenging behaviour which can come about if that person feels threatened out of fear. It put me in a position where I had to deal with situations arising. Crisis team did not turn up but then what would they have done – she would have just ended up back in hospital again. You are excluded as a family member from any discussions and meetings in the community. You are treated like you are invisible when all along Elizabeth wishes the whole family to be involved. She has said so several times.
If accommodation locally could be found there are people I know who could work with Elizabeth effectively who have known her since a child and who would not put her under pressure. If a room could be found like that in the scheme she was in and direct payments provided this would be the cheapest option.
BEST SOLUTION: – the best solution would obviously be to place Elizabeth at The Retreat for their year long programme called Acorn.
ANOTHER SOLUTION – in every case placement into the community has failed and why? -this is because the one thing that Elizabeth craves is a circle of friends and to have interests. Isolation and loneliness has caused her to go downhill. Friendship and interests are what is important and a community style is what I feel would benefit Elizabeth who was not happy in the scheme – a hospital is not the best environment to make friends. I think that somewhere like Camphill Community Trust is the answer. This is for people with learning disabilities but several people have identified this is what Elizabeth has and what they do there is encourage independence, give hope to people in a natural environment, working with animals, learning new skills, art and crafts, farming/gardening. This is the right environment for Elizabeth but some of these places have strict criteria ie they favour those who live in the local area. There is nothing in my area and I have telephoned some of these places – they are either full up or you have to live within that area. Well there are two centres that are within the areas of other family members who own property and live nearby. This is the right environment – not a prison-like hospital where smoking goes on. If Elizabeth has to remain in a hospital environment then certainly not a PICU – this is totally wrong and so is an acute ward. At least The Retreat have beautiful grounds and they treat patients with respect unlike the majority of NHS/private sector wards that believe in forced drugging and ECT. I believe that Elizabeth should be a voluntary patient sent to The Retreat first of all and when you think how much money this is costing I bet that The Retreat offering the correct kind of care in a nice and healthy environment would work out cheaper and properly address underlying issues and then Elizabeth could be living independently but I also like Camphill Community Trust and Care Farms and some of these are in the right area where other family members live.
I will be visiting Elizabeth later today and will keep you informed of her progress.
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.
Dr Ahmad had contacted me during the week and said he would like to speak to me following my emails to him in which I asked some very good questions such as:
What does Upper Richmond Ward of Huntercombe Hospital offer exactly?
Do they offer assessments for Aspergers?
Do they offer assessments for complex PTSD?
Will Elizabeth be able to take part in the PIP Antibodies Research that Professor Lennox is doing that Elizabeth consented to? A researcher was going to visit her on Suffolk Ward but she was transferred without any warning.
Can Elizabeth see an Endocrinologist?
Elizabeth should have tests as she has been hit around the head lots of times on Suffolk Ward.
Does the ward have EMDR/Psychotherapy?
Can Elizabeth have her phone back?
Did Dr Ahmed know that Elizabeth is allergic to Rispiriedone and came out in a rash and should therefore be taken off this chemical as was previously recommended in the files. I got the feeling he did not know this but I can prove it.
Did Dr Ahmed know that Elizabeth is a non metaboliser of psychiatric drugs and should not be given them for complex PTSD – the correct diagnosis is Selyes Generalised Adaptational Syndrome and she is chronic treatment resistant and that means someone cannot metabolise the drugs. I attached the report from Holland to my email.
I then went on to say that the ward was another ward that was not suitable for Elizabeth’s needs it is PICU and it is noisy and volatile on this ward. How can anyone get better here with all the noise?
When Dr Ahmad telephoned he listened to me and he agreed with EVERYTHING I said. I told him the ward was not therapeutic. I then told him about the wonderful care we provided that took Elizabeth to Australia. I would say this is proper care that included music therapy and art therapy. He was very interested when I told him about Paris and that Elizabeth stayed on a house boat in Paris and attended the World Hearing Voices Congress. He then went on to say did Elizabeth hear any voices and I said NEVER! I told him that Elizabeth came back well after that wonderful care but deteriorated through lack of support in the community. I mentioned about the healthy environment unlike London. A natural environment where there were animals, peace and quiet and no pressure. I mentioned about the scheme in the community and how pressure was put on Elizabeth expecting her to attend meetings. All the same I am disappointed things did not work out as it was in a nice area.
I mentioned how unhappy I was that Elizabeth was being drugged so excessively that she could hardly open her eyes. She could not walk hardly and I told him that it was very wrong that all patients were sectioned and there were no voluntary patients there on the ward. I explained that Elizabeth was allowed out on her own in Australia, France and Spain and Scotland so why not there? The surrounding area is very nice so I believe Elizabeth should be allowed out like she was on Trent Ward and Suffolk Ward. It is lovely weather and I am saddened to think that my daughter is stuck in a hospital like this and now allowed out in the fresh air. The local area of Enfield Barnet and Haringey MH Trust are short of beds because they do not offer the right kind of care on their wards and they have poor facilities and something needs to be done about this. So the answer is to use Cygnet, Huntercombe and places like this but I never got any answer from Dr Ahmad as to what his ward offered in terms of assessments and care as all I have seen so far is Elizabeth drugged up three times daily on Clonazepam and I despair – Rispiriedon which is not recommended I am sure for complex PTSD. It should only be given in any case up to six weeks and I am not happy at all that Elizabeth is on this chemical that causes huge weight gain and she did not get on with this before. The chlorpromazine is a drug that is more likely to become addictive and Dr Ahmad said he would reduce this first and take her off it altogether from next week but I told him that I wanted him to start the reduction this week not next week. He did not mention about the Rispiriedon what he was going to do about this and I said I was not very pleased.
I told Dr Ahmad that there was lots of people including myself that Elizabeth was happy to share information with as Elizabeth gave permission yesterday in writing.
It is coming up now for her time to challenge a Section 2 which is 14 days. Fortunately Elizabeth appointed her solicitors in good time but she has no advocate. If someone has no phone and is drugged up to the neck it is easy to see how some patients can be stuck on wards such as this – a secure prison type ward for many many years and drugged enormously. I mentioned about this to Dr Ahmad but he said this would not be the case and agreed that she was not in the right place so once again the Commissioners at ENFIELD are paying a fortune for something that is not right for her.
Many friends are kindly helping me right now as this hospital is a bit awkward to get to but not impossible.
Elizabeth has been using the patients phone. It is not good to get through if you do not have a mobile – it is very hard and easy to be cut off completely from the outside world and be in a world of haze because of the drugs and I believe what he is giving is:
1 mg Chlorpromazine and 1mg Rispiriedon three times a day. When the drugs are dished out staff threaten patients. They say that if you do not take the chemicals they will forcibly inject you. Elizabeth does not like injections which is one of the reasons I took her off the Clozapine. I made a point of telling Dr Ahmad that this drug was one of the worse ones and caused NMS which is a very serious condition. NEVER AGAIN MUST THIS DRUG CONTAINING TALC AND ASPARTAME BE GIVEN – it caused tachycardia. Elizabeth looked terrible on this drug and used to get upset at having to go for the blood tests.
The correct care I would like to see given is not available in Enfield and everyone should question WHY NOT? It is common sense not to just dump someone into the community without providing the therapy. Now look at the waste of money. If proper care was given like I provided long term then this would be cheaper than all these admissions onto prison type wards.
The Commissioners need to look at my blog and provide the correct care in my opinion which I have found in York on a long term programme called Acorn. It is I believe a year long programme and then Elizabeth can be placed in the community again. By this time she would not need a supportive housing scheme but would be independent like she came back from Australia. This hospital has beautiful grounds and offer humane care – I am sure staff there would not threaten to force inject someone. I honestly think Elizabeth could get well again there.
Anyway now that I have consent along with all the advocates I wish to see if Dr Ahmad has in fact started the reduction before he goes away next week. I made a point of asking who will be acting RC but I do not recall him telling me or answering my queries above. Solicitors will be visiting Elizabeth and I will ask them to find out who is acting RC and I need both psychiatrists email addresses which Dr Ahmad did not know off hand.
The last thing I asked of Dr Ahmad was to check in the fridge as I was concerned that the food I brought along on my first visit had gone missing according to Elizabeth. Dr Ahmad said he was very busy and did not have the time to look but I will be checking on this tomorrow as if this has gone missing I will not be very pleased. I remember at the Bethlem Dr Ann Blake Tracy recommended some fabulous oils that she said would benefit the entire ward. Also the supplements went missing between them and Cambian and I am far from pleased about this.
Support worker Joseph told me that nothing goes missing on Upper Richmond Ward but I need to hear from Elizabeth about this.
Elizabeth wants a Chinese Meal but I am not familiar with where is the nearest restaurants and need to look this up to see if I can order it for her as I will not be visiting until Saturday.
MESSAGE TO DR SHAKEEL AHMAD – please check the fridge tomorrow to ensure that Elizabeth’s food has not gone missing and please leave the drugs chart out for me when I call and one more thing – please can you ensure that there is a room booked for me to visit Elizabeth on Saturday. Thank you very much.
I will also make a point of telephoning as I remember turning up at the Bethlem once with Elizabeth’s cat and she was not even allowed to come down to the car to stroke the cat and I had brought a lead along so that we could have walked in the beautiful grounds. (see my blog “Abuse at the Bethlem”)
Anyway I must look up these restaurants now for tomorrow and will keep you all informed.