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.