Author: Sam Sly
A version of this article was first published in Learning Disability Today.
As the Individual Health Budget Project Beyond Limits is part of in Plymouth enters its second year, I have started to meet and work with some families who have different views from those we met in year one. These families don’t want their relative to move out of the Specialist Hospital setting they are in despite them being hundreds of miles from home.
This is not to say that these families are not just as passionate about their relatives, nor do they love them any less, and they still only want what they feel is best for them. These families have just been so profoundly affected by the lack of support, failed services and rejection by the systems that were meant to protect and help them and their relative in the past that all trust, hope and optimism for the future has disappeared and they are very scared of any change. It has been truly humbling to listen to the heartache and mental stress these families and their relatives have been through trying to make things work when they lived more locally, and for them to still take part in planning for the future.
I took two of these family members in my car on the 750 mile round-trip to do a service design meeting for their relative. These trips are very useful (about the only thing about someone living so far from home) for getting to know people and listening to their story as 14 hours in a car makes or breaks relationships!
They were grateful for the lift as their usual journey four times a year takes 24 hours round-trip on a bus. They have been making the trip for over 8 years now and have had to make it into a mini-break as it is too far to do in a day (paying for travel and accommodation themselves). They don’t want things to change and would rather make these trips than bear the consequences of another placement in the community for their relative.
One of the family members summed up how they felt about their relative being in a Specialist Hospital, and wanting them to remain there as: ‘he is not hurting, he is not hurting anyone else and no one is hurting him’.
I found this statement very profound but could not blame them for wanting so little for their son after hearing the catalogue of disasters, poor support, and heartbreaking decisions they had been forced to make, including sending him away, when he lived nearer home and things went wrong. They are also both retired and could not imagine how they would cope with the worry and involvement they used to have to give, as they were always called to help out, when things went wrong. And they can’t imagine, nor have any faith in, it not going wrong again.
All this makes me both angry and sad on two counts, not with the family, but with the systems that I have been a part of in the past, which enables this situation to ever exist.
Firstly, we do families a great disservice when discharge planning is not started on the day that their relative is admitted into Hospital. This enables families to gradually fall into a false sense of security that their relative may be able to remain in the Hospital environment long term. No one would blame them for this hope, when for perhaps the first time in years they are able to breathe a sigh of relief that they don’t have to worry for a while and can get a semblance of life back, but then weeks become months and soon the years roll by and their relative is still in Hospital
Secondly, if a person is admitted for assessment and treatment surely the Hospital should be made (through commissioners) to give detailed plans of what is to be ‘assessed’ and ‘treated’ and a timescale for release? Treatment is surely a short-term thing so I wonder what is still being ‘treated’ after 8 years. Should they not then be held accountable if the treatment is not successful in the timescale? These are questions I have yet to get a good answer to. Interestingly the Specialist Hospitals that have engaged most proactively with us on this project have been those where the person has been there for less than a year as they are keen for the person to move on.
The expense of someone living away from their community is immense in all senses of the word; emotionally, treatment costs, costs of visiting and professional visits and reviews plus the costs of transition back home which should not be underestimated.
When are we going to learn to spend time getting it right first time, and not giving up on people in their local communities?
The publisher is The Centre for Welfare Reform.
What is Assessment and Treatment? © Sam Sly 2012.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.