Challenging the health professionals

Many of our great charities and social enterprises have been borne out of frustration with established ways of doing things or rejecting the professional approach in favour of championing the consumer. In mental health and in learning disabilities or disabilities generally ; parents , carers or citizens have come together and fought for better ways of delivering services and champing the voice of the consumer and citizen. This is important in the current work of reflecting on the Bill.

Let me give you a brilliant example of what I mean.

In 1938, Judy Fryd noticed that her young daughter Felicity was not using language as fluently as her peers, but searched in vain for help and advice. Felicity was rejected from her primary school after only half a day for being disruptive. Within 24 hours of her arriving at a school for children with Down’s syndrom, Felicity’s parents received a telegram from the school that said “Felicity not suitable. Must be removed at once.” At the age of 12 she was institutionalised in a psychiatric hospital. Felicity was described by a doctor as “a child with no mind” - today we would recognise her condition as autism. The way her daughter was treated, the prejudice she came across, and her family’s powerlessness against it, led Judy Fryd to channel her anger through the letters page of Nursery World magazine. Within a month more than a thousand parents had been in touch, and a group of parents in a similar situation banded together with Fryd to form the Association of Parents of Backward Children (now Mencap) in an effort to confront the way their children were treated. Today Mencap is a significant force in supporting people with learning difficulties to live independent, fulfilling lives, providing nurseries, training colleges for around 250 students, support with employment to almost 5,000 people, helplines accessed approximately 33,000 times a year and a wide variety of other services. It has a proud history of campaigns which have significantly changed the law regarding the treatment of people with learning disabilities and their families, such as the 1971 Education (Handicapped Children) Act, which sought to ensure that children with learning disabilities received an education, their having previously been considered ‘ineducable’. Thanks in no small part to the way Judy Fryd and other parents banded together, and thanks to the service provision and campaigning of the charity they formed as a vehicle to do so, the powerlessness and poor services Judy Fryd and her family faced in the 1940s and 50s are significantly reduced today – even if Mencap and other charities continue to face, and struggle against, significant challenges for people with learning disabilities.

This is the power that our third sector brings to the work of the health service. It needs encouraging and expanding. Commissioning needs to ensure organisations like Mencap grow Unless the reforms of the current Bill provide for a major expansion of our sector they will have failed to deliver patient empowerment and better health outcomes.