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I went to the Service Users Redesign Meeting at the Norfolk and Suffolk NHS Foundation Trust. This meeting was to give Service Users a chance to discuss and ask questions about two individual pathways. Pathway D Non Psychotic and Psychotic Disorder and Pathway A Primary Care and accessing more specialist support. There were also other Service Users invited from Rethink and Mind and other organisations which was really good.
The meeting was very successful and I enjoyed meeting the staff from the different pathways and being given the opportunity to ask questions directly to them. It was also nice to meet other Service Users from other organisations. The group asked many questions and I think the meeting was very useful and successful.
I was particularly interested in both these pathways but especially the Psychotic Pathway. I asked many questions and raised many points which included some of the following. Usually I am very quiet on the SUC but I was quite pleased with myself for having the courage to ask these questions and raise important points. I was not feeling particularly well at the time so perhaps that gave me the confidence that I usually lack sometimes.
I said that I felt it was unfair for instance that one person can make a decision about your care and what services you can access and that if that person gets it wrong, the door and all services are closed to you. I said there should be a panel of people to make it fairer and that other people like your doctor, family etc. should be included in the decision making process. I realise this would cost more money but I think it would be a much fairer system and people unfortunately can make mistakes.
I also mentioned an idea which my Wellbeing Mentor has said and I also agree with and have been involved in as you are probably aware if you have read my blogsite. I said how my Wellbeing Mentor has helped me but I got this person through Rethink and not the NHS and because of my animation project ‘Yessica’s Journey’. I mentioned how you need to see someone over a long period of time to build up TRUST with them and to open up to someone and talk. That is when you start to listen and take notice and learn to develop a more positive attitude, then you can gain HOPE. It needs to be a person who is a good role model and has experience of mental health. I said this person would be willing to come and give a talk to the group so I hope he is invited.
I also said that what was needed was a Wellbeing Mentor who is in charge of the persons care and perhaps the Volunteers and the Service Users who are helping that persons care. That volunteers and service users could be used for certain skills and tasks to help people with problems, and that the Mentor was the main professional who took the responsibility for that care and main talking therapy for the person, also accessing other services and professional expertise. I strongly believe that Creativity is extremely important in helping people who have Mental Health difficulties and helping to improve their wellbeing and self-confidence.
In fact one of the staff said to me afterwards what a great idea it was which was such a lovely thing to say, this meant a lot to me. I told this person that it had also come from my Wellbeing Mentor who deserves credit for his innovative ideas.
Another subject I brought up was about age discrimination. For obvious reasons as in my own case this is something I feel very strongly about. I said that why is there an early intervention psychosis team which only treats young people up to the age of 35. What happens if you are 36 or in your 40’s. What if it’s your first experience? Is this fair? In my situation I was terrified and had no idea what was happening to me, I should have had access to this service or something similar, a talking therapy of some kind. Hopefully the system has now changed.
I also sent one of the staff on the Psychosis pathway some extra questions as we ran out of time and she very kindly said when she had time she would answer them so I am looking forward to receiving them and I do appreciate staff are very busy, so I appreciate her time and interest. I thought this was very kind and thoughtful of her.
Here are the extra questions I asked. I had many more that I would have liked to ask but just concentrated on a few.
- If Hope is central to recovery how will you use service users lived experiences to show Hope to people who are experiencing Psychosis? How will you use Service Users stories of Hope. How will you monitor the process? How will you make sure the process is fair?
- How will use safeguard vulnerable adults who are feeling unwell and ensure they receive the right advice and message of Hope?
- Would you provide professional training for Service Users and what would this be? How will you select suitable candidates for the role?
- Have you thought about using creative activity as a way to help people who are experiencing Mental Health problems and creating useful projects which actually enhance peoples wellbeing and confidence and helps them to explore their own mental health?
- Research is very important in understanding Mental Health. Have you thought about using ‘Service User’ Research to enhance the Trust’s Understanding of Psychosis. Using service users stories of experience, specific case studies, questionnaires, interviews. Monitoring, recording and analysing the results to help improve the understanding of Psychosis?Are you involved with other organisations with research into psychosis?
- How will you ensure that service users are treated as individuals and recognise that each person has a unique experience of Mental Health? Are you going to move away from the typical Tick Box system and one size fits all way of thinking?
- Often personal qualities, experience and skills are equally as important as qualifications. What personal qualities and skills will you be looking for in staff.How will you make sure that you find the right staff with the right attitude and skills to help people experiencing mental health problems?
- How will you monitor the effectiveness of staff?
- How will you make sure that your staff receive proper training and guidance, support and time to ensure they give a good effective service. If staff are unhappy this sometimes reflects badly on the very people they are trying to help.
- How will you ensure that you provide a Fair system for everyone who experiences mental health problems. What will you do to ensure this? In a tick box type system often many people are left out from being helped as certain criteria can go against them.
- How can you ensure that assumptions are not made about what someone experiencing Psychosis says? How will you ensure that they are listened to properly? Sometimes people may have delusions but sometimes in amongst the delusions there may be some real events happening which are true. How will you differentiate this and how will you offer reassurance to someone?
- Medication is important in helping someone to get well but talking therapy is equally as important especially in helping people to understand what is happening to them, why it is happening and how they can help themselves. It also opens the doorway to TRUST and HOPE. What talking therapies are being offered as a service by the Trust for people who are or have experienced psychosis?
- Is the Trust actively seeking out new and old therapies, researching therapies and trying out therapies to find out which ones work best and also find out good professional organisations and therapists which work and work well? Sometimes what works for one person will not work for others so it is important to offer a wide diverse range of therapies and therapists. It the Trust using Research to formulate ideas?
- Is this something Service Users could be involved in helping with – surveys, questionnaires etc. Monitor and recording of information perhaps so there is a database of good therapists and therapies. Could service users help the Trust in researching therapies in some way?
- What do you think of the idea about psychiatry becoming like other medical specialities where there is a range of tests including imaging tests of the brain functions, blood tests and psychological tests to find out about susceptibility factors to mental health problems, help with diagnosis and enable help in a different way?
I also asked several questions for Pathway A, mainly about what talking therapies were being offered and about the new Wellbeing Service. I am also very interested in this Pathway as it is about helping people before they reach Crisis Point and it is about Wellbeing and staying well.
I enjoyed the meeting but unfortunately I could not attend further meetings the following week which involved other pathways.