My Involvement With PenCRU- Learning Together
I first came across PenCRU when the Challenging Behaviour Foundation circulated a link to a neuro- development study which was being undertaken by PenCRU on behalf of Cerebra early in 2012.
Seeing that PenCRU work closely with families in the field of health research I really wanted to find out more about what they do. Being the father of a young man with complex disabilities has given me a desire to find out more about his health, what is known about his condition and how I can help him. I also wanted to learn about related health issues and to be able to ask questions from others that perhaps have had similar experiences. My specific interests include: dental treatment, constipation issues and the link between autism and bowel/stomach problems. I also have a specific interest in chromosome 13 as my son has an inversion in the long arm and have no idea what this means in practice (If anything).
A bit about me and my family
For many years I have struggled to try and get access to health care for my son. The combination of a severe learning disability, limited mental capacity, autism and severe and challenging behaviour has meant that any medical intervention has been extremely difficult. Even something as simple as a dental check-up has been nigh on impossible.
During his teenage years Adam suffered terribly with constipation but try as I might I could not get anyone to accept him for diagnosis or treatment as they said he didn’t have the ability to cooperate or the capacity to consent to treatment. The only option offered was laxatives every time there was a problem. GP appointments were also very difficult so eventually it seemed we were being excluded from every opportunity to address Adam’s health issues.
In his early twenties Adam started to lose weight worryingly and his stomach discomfort started getting worse. Faced with no other option I contacted a solicitor and applied to the Court of Protection for help. They ordered the NHS to step in and made me Adam’s health and welfare deputy so I could advocate effectively and consent to treatment. Over the following months we managed to get him the treatment he needed and even complete a dental examination and treatment all under general anaesthetic. You can read our story here
That was three years ago now and Adam is much better though his stomach problem has still not been effectively diagnosed. Adam still does not have routine and on-going NHS monitoring even though as a result of his chronic constipation he now has a floppy colon which means he is vulnerable to bowel compaction. My fight continues.
How I have been involved with PenCRU and the Family Faculty
I became involved with the Family Faculty in 2012 and submitted my first research question in July 2013 on the topic of Dentistry for children and young people with learning disabilities and challenging behaviour.
Last year I was very pleased to be involved with the Hospital Communications Project as a remote working group member. Obtaining reasonable adjustments for our sons and daughters can be so difficult and good communications between the patient, their family and professional is vitally important. The project developed some training for professionals to help them understand our needs.
More recently I have attended a Family Faculty meeting, a rare event as I live 140 miles away, which I really enjoyed in the company of other parents carers and the professionals from PenCRU. As a result of that meeting I offered to help develop the PenCRU and Family Faculty Handbook and helped suggest and develop new ways of engaging with families which has resulted in this blog being published.
Please do contact us if you would also like to share your experience of being involved with PenCRU!