Debbie Butler (PPI Coordinator) ~ 2nd Post

Well what a week. There has been progress with the MHRN Industry Group of service users and carers. This group has met twice now and are preparing to meet again in a few weeks.  The MHRN are pushing for more recruitment to these types of studies and although it is very complicated, we were privileged to have a good few people attend our first couple of meetings and give positive comments on being involved. The next meeting is the subsequent step where we discuss as a group the way forward and look at where we can get involved in the different studies. Personally I find it quite a difficult subject to understand but I am sure I will get there. (Perseverance is the key.) How can we as a small cog in such a massive, global enterprise make our way into what seems a very closed shop when often, so I have been informed that the large organisations that develop these studies have never ever involved the public and users of the medication that they produce. More positive things have happened within the MHRN – we seem to be ironing out difficulties which moving into the new building have bought about.

Another positive for me this week has been on a personal basis really and a big boost to my self-esteem. I have been asked by various members of IMH staff about patient involvement and have been glad to help. Thank you to those who have asked and if I can be of any help to others please let me know. My experience within the Trust has been over a good few years and I have met a quite a lot of individuals from doing this. My mum always asks me if there is anyone I don’t know. It’s not unusual for me to go out without seeing anyone from work or the classical music scene.  Keep fingers crossed for me, I am seeing a new singing teacher today based at the Uni.

Patient and Public Involvement for the MHRN took a great boost on Friday 27th July as I went to the Rosewood involvement centre up in Ollerton to talk to their Friday Group about the MHRN and can I say, I came home feeling like I was walking on air.  The Friday group is a well attended group of service users and carers who get together for support and encouragement to each other and to hear about different things going on in the Trust and outside. The Rosewood centre is the sister Involvement centre to the one at Duncan Macmillan house and is a very thriving place to go. They even have their own belly dancing troop. There was so much enthusiasm from the entire group to listen, ask questions and equally wanting to become involved it was just astounding. Can I post a great big thank you to them all. I have so many contacts to make and friendships to develop, it was extraordinary.  The MHRN as an organisation is obliged to involve service users and my job is to co-ordinate the involvement and recruitment to different research studies. The boost from attending the Rosewood centre was that we could form a group in the North Nottinghamshire area and help researchers who can sometimes be Nottingham centric develop studies in the north of the county. I am sure the group would be very useful. The wealth of experience is an added bonus to anyone in the field of research.

I was one of the first service users to be employed by the Trust way back in 1999 (I think it was then). And have seen a tremendous development in this area. I cannot thank all my friends and colleagues enough for their hard work in developing Involvement. It started off with one young man called Liam O’Neil who sadly is no longer with us but his name is kept alive with one of the Trusts OSCARS bearing his name, and has developed into quite a large staff team.  Liam was a service user who I met when I was a volunteer at the Nottingham Advocacy group; he was quite a cautious man but was very vocal and knowledgeable around involvement of service users in any aspect of their care and the organisation of the Trust. Liam worked on his own to begin with to set up the involvement department in the Trust until a manager was appointed then things seem to go all out to what we have today, two Involvement centres.

Posted by:
Debbie Butler
Patient and Public Involvement Coordinator
NHIR Mental Health Research Network
Mental Health Research Network
East Midlands Hub

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