Today has been a busy day getting together all the food for Elizabeth’s Birthday party and fortunately I had help in doing this.
I’d ordered pizzas, from Sainsburys vegetable curry and rice. It is not the weather for cold food but I prepared a Greek salad – a nice mixture of food and cakes and healthy drinks.
I was grateful for the assistance by a friend in carrying so many bags onto the ward and everyone sang Happy Birthday. This was a bit overwhelming for Elizabeth.
Suffolk ward Chase Farm Hospital kindly allowed me to do the little party for Elizabeth and all her friends. She has made some very nice friends in the short time that she has been back on the ward.
It was last week I received a text message from Elizabeth to ask me to call and see her that she had been taken from her home to Suffolk Ward a- warrant had been obtained. I do not agree with the way that recall to hospital is conducted as a result of negligence by non provision of any kind of care in the community.
I had received a phone call from a social worker claiming to be an AMHP about a week prior to say that 2 Drs and 1 AMHP had recommended Section 2.
Since July 2019, Elizabeth had been living in a very nice flat – the only decent accommodation she has ever had in the local area. The flat is spacious, she has all her possessions together and it is within walking distance of the family home which means I can help her at weekends when I am around but I had not been well since Xmas and for a few weeks was unable to go round to help Elizabeth.
Friendships Elizabeth had formed in the community have not been good and have brought her down. Some of these friendships have been disastrous and Elizabeth who has a different way of interpretation can take things the wrong way and this can push friends away. Very sadly this has led to isolation with no help and support in the community since July 2019 decline was evident. At this time of year many people can feel affected by the weather which is miserable, bleak and cold.
With nothing provided to do in the community – no support worker/mentor Elizabeth was turning to Samaritans, to my friends, then sadly Police to talk to as well as myself of course. Police not knowing Elizabeth personally would hear that she was desperate for f help/support. She had never self-harmed before but may have said that she did not feel like living. Police would call for an ambulance and she would end up in A&E when all she wanted was someone to talk to. Sometimes she would get brutal treatment under the MH suite of the A&E. The last time Elizabeth told me she was injected and that she was pinned down by several staff and overheard them talking about resusc. in another room as this was a face down restraint which is appalling. When Elizabeth’s friendship had ceased, a toxic friendship which was detrimental to both, Elizabeth made other friends who also had issues and lack of understanding can arise without any guidance in the community from the professionals involved. This friendship also appeared to be a disaster which led to isolation, a feeling of desperation as Elizabeth had told me that she had trouble processing information and that no one understood her. For instance she could say something and mean the opposite.
Elizabeth was under the Community MH team again and they were contacted presumably by Police or Ambulance who sent round the Crisis Team. The Crisis Team just sit and chat and what is needed is a mentor or buddy or support worker to give practical help even it is simply to do with socialising and social skills. I am quite astonished that this was once again not provided because it was certainly promised and documented in the care plan that Elizabeth had full support to maintain the tenancy, to budget, and other forms of support which was not true at all. This was not being provided by her care coordinator. She certainly needed help with budgeting and most things fell on me.
Elizabeth called in to the Learning Disibility/Autism Group office. She had tried to get a referral and when I heard that she seemed to be getting nowhere with this I tried to help. The GP referred her. I then helped her complete the forms and everything seemed to be going OK. Elizabeth was waiting for an assessment by them in the hope some provision could be made in the form of a mentor in the community who could understand and communicate with her effectively. The content of the form completed was applicable in every way to Elizabeth in terms of developmental disability which goes way back in the files and since Elizabeth was off all medication she spoke very clearly that she had problems that went way back to primary school not secondary school – the problems she described were developmental and this had been identified when I provided private care for four months.
I was with Elizabeth at her flat when the care coordinator called along with the Responsible Clinician of the community care team who hardly ever sees Elizabeth. Elizabeth was not calm in their presence and flared up when she saw them and unknown to her they were there for the purpose of doing a MHA assessment. She had trusted them and let them into her flat. I could hear them talking about recalling her back on the ward and supportive housing was mentioned but look at the shocking places that Elizabeth has been provided under the local area. Elizabeth told me this was not what she wanted but she did want support in the community. The care plan stated S117 aftercare but this was never provided. I had managed to obtain the new care plan.
In the new/current care plan it says No to S117 which I have found out is illegal following Section 3 and that she should be entitled to such care.
I had also heard an Agency was approached to work with Elizabeth but declined and this led me to believe that under a MH team Agencies they used may not have the specialist communication skills of say a Learning Disibility nurse and I have seen Paula McGowan’s campaign that such training should be made mandatory which I could not agree with more. This is why we both wanted the referral to the other team as it is not impossible to find someone to work with Elizabeth but if they are not correctly trained and do not have the right communication skills then the effect of such professionals can be as toxic as the friendships Elizabeth had formed.
It is sad that she is back on the ward and the ward is no place long term for Elizabeth who also suffers from complex PTSD.
The entire family put in effort to making her flat nicer so she can now listen to music, play videos, watch TV. We have done this for her Birthday and now she is stuck on the ward again and we are back to square 1.
I think Elizabeth enjoyed the little party today and I have to commend Suffolk Ward for allowing this to take place. There was music and staff got up and danced and so did the patients. They provided her with a Birthday cake. I saw Elizabeth smiling a lot and one consolation is the fact she has made some lovely friends on the ward. When you talk to these friends I feel what on earth are they doing on the ward and many are highly intelligent.
My view is that such wards should not be used long term and many end up on the wards because of lack of community care and I think they become isolated in the community with nothing to do except go shopping and in this awful weather too it can affect anyone not just those with mental health conditions.
I believe community care is lacking and totally lets people down – there needs to be more investment in this area. A solution would be a network of peer support workers is and open dialogue so that people like Elizabeth do not become isolated and go downhill. If someone called on people like Elizabeth to take them out in the community, to help build up their social skills and confidence this would be brilliant.
There used to be a very nice group where Elizabeth would be picked up and taken out in the evening for quiz nights, meals – a little social group and this is where funding should be going on, not court and displacement of the Nearest Relative cases. Funding needs to be spent in the right way and a start would be finding out the right things that are required by giving every patient a questionnaire to see what they would like provided in the community, not just dumping them back to their schemes/accommodation unsupported in any way. The answer is certainly not medication – in Elizabeth’s case the answer is friendship and help in terms of friendship and socialising, then practical support which should have been given in the first instance.
My final comments go on the new care plan. I do not feel it should be allowed that strangers such as admin officers make entries that are completely untrue and misleading. Records need to be accurately maintained and the new care plan is a disgrace.
I am having to correct this new care plan as it is totally inaccurate. The admin assistants work at St Ann’s Hospital and I have previously complained about the inaccuracy of the care plan and some disturbing false comments therein. No-one has taken any notice and I have had to complain to the Chief Executive of the Trust.
I now want these comments taken out of the care plan completely and I am correct it myself to ensure total accuracy.