John Wallace, who runs an advocate group for people living with rare disease, on why named person proposals keep him awake at night
People living with a rare disease and their families amount to 300,000 in Scotland according to the Scottish Government and they face significant social and daily life challenges which affect their autonomy, their dignity and their fundamental human rights.
Integrated care provision and coordination between medical, social and local support services, via multidisciplinary care pathways and innovative care solutions, is a crucial game changer to tackle the unmet social needs of people living with rare diseases and none of this was even considered in coming up with the named person legislation. Nobody asked anyone in the rare disease community or indeed the disability or carer community.
Families of children with rare diseases represent a motivated group striving to find what is best for their loved one, make the time and find the energy to sift through thousands of pieces of information to find that one pearl, no matter how small. They dedicate their lives to researching their children’s condition.
This dedication, in turn, can mean that even as they turn to medical professionals for help, it is those same professionals that in fact look to the parents for guidance.
Named person is the one thing that keeps me awake at nightJohn Wallace
Parents are accustomed to being the experts; in fact, they are acknowledged to know more than the specialists. While we expect doctors to be medical experts, the truth is they are not, they often have little knowledge outside the area of their expertise. Most doctors who treat a rare disease child may never even heard of, much less have any degree of medical expertise in, the disease at hand.
My son is eight-years-old and the only child in the UK with Familial Cold Autoinflammatory Syndrome Type 2. A lot of his life is in pain and is at times totally unable to walk. My wife has the same hereditary disease.
We have a brilliant working relationship with my son's headteacher and school and we all work together to ensure that his education is first class. We see medical professionals in Edinburgh twice a week and in London every few months.
All tell us that we are the experts and take guidance from us for everything including trial drugs which could alleviate some symptoms, but which seriously compromise the immune system and have extremely serious and painful and traumatic side effects.
What if our consultant changed and the new consultant wanted us to try a drug we were not happy giving to our son, or indeed try once again the drug which gave us our 34 days of hell? The legislation allows the consultant to contact the named person and promote said views without even consulting us.
We go out of our way to enable everyone dealing with my son to work together, whether that be professors, consultants, GP, rheumatology nurses, physiotherapists, occupational therapists and all the other medical professionals and the educational professionals in school.
I am the named person and I can do it better than his headteacher or anyone else because I live with it 24 hours a day, 365 days a year I don’t take school holidays nor weekends off. I am with my son whenever and wherever he needs me.
Named person is the one thing that keeps me awake at night.
John Wallace is Chairman of NLRP12 – The Scottish patient advocacy group for Familial Cold Autoinflammatory Syndrome Type 2.