Why holding an event for families who have their loved ones in Assessment Treatment Units is important
Over the years we have met families from one end of the country to the other who have children with a range of impairments and ages. The families come from different cultures, backgrounds and education. They may be at different stages of their journey as a parent but the one thing that they have in common is that they are all parents of disabled children and each one has an understanding of the challenges and barriers the others face.
Many people who come together find the opportunity to be in touch with others who have had similar experiences a source of unique understanding and mutual support.
Learning from sharing
Parents for years have said that their main way of receiving information is from speaking to one another
“I learned far more from other parents than any professional has told me”
Parents often say that their biggest support is from other parents. Parents who are active members in support groups overcome isolation, make friends, feel better about themselves and become more involved in their communities.
Families with loved ones in Assessment Treatment Units
Bringing together families with their loved ones in Assessment Treatment Units at an event led by parents seemed the right thing to do. We had no idea what the response would be when we arranged the date with our highly committed small volunteer steering group (Liz Wilson, Liz Gowe, Noelle Blackman, Zoe Thompson, Jeanette Thompson, Sam Clarke, Debs Aspland, Katie Clarke and Pippa Murray).
The priority in all the planning was the parents themselves, not their children, not the organisations who may be supporting them, and not the services that may be part of the system that challenges. NHS England provided us with a small grant that would directly pay for families accommodation, travel costs and
bottles of wine in the evening. Actually we will all pay for our own wine! NHS England have just let us get on with the event planning and not interfered one iota. That is the partnership working we like!
We asked some of the families we know what they hoped to get from coming together at an event? Was it to campaign or have a voice or was it to stay strong together? They told us that staying strong was a priority.
We know that building communities and having a voice does not just happen. Consultation and participation is an easy thing to say you can do but the reality is that it takes time and trust and has to be for the benefit of families. Families with children and young people who are in ATUs have incredibly complex and complicated tough lives.
The aims of the event
From listening to families we put together a few simple aims for the event:
For families to
- come together and meet one another,
- share stories,
- find their ways of staying strong,
- collating their top tips for survival and
- finding ways to move forward.
This we hope will give parents mutual support at a time of crisis as well as providing self-help and community resilience. We hope that this will give people the opportunity to work together with the same purpose – to help others on their journey and to prevent more children and young people from going down the ATU route.
The Response? Fully booked within days:
What we had no idea about was the huge response we would get and within days we had interest not just from parents with their loved ones in ATUs or had been in ATUs but also parents wishing to bring their young person; professionals wanting to hear and learn from the stories; organisations wanting to support; parents worried about their own young person ending up in an ATUs and even care providers wanting to bring adults who have been in ATUs.
The flyer went out via social media, a number of disability issue based bulletins, and the NHS newsletter In Touch. Commissioners and medics have even sent it to parents they thought would be interested which is great.
We had to set a limit to the numbers and the event was fully booked very quickly. The demand however, was such that we now have a waiting list that would fill another event (or two)! We are eager to hear from people who would have liked to have come but were unable to for whatever reason and to find out if we do run a second event what you would like to have on the agenda for the day (other than wine in the bar).
Together we are definitely stronger.
For more information on the day or if you are interested in knowing more about future events please contact