Five Decades of Reflections by a Carer of a Learning Disabled Son—From Hospitalisation to Care in the Community

I am Barbara, now a widow in my eighties and the mother of my recently deceased son, Chris, who lived his life with a learning disability. I continued to care for Chris through the years of closing institutions and into the era of care in the community. Attitudes towards carers have changed over this period and my story below reflects both mine and Chris’s journeys.

Chris’s diagnosis from early childhood was one of Tuberous Sclerosis, a genetic condition which is associated with neurological complications such as epilepsy and severe learning disabilities. My lived experiences as a carer changed over the years, and I also gained new insights into health and social care systems after I qualified as a social worker in my forties. My lived experience and desire to help other families affected by disability led me to specialise in the fields of hospital social work and learning disabilities. Since retirement I have been active in a range of voluntary work with Healthwatch, prostate cancer support and dementia cafes. I am also a member of the IMPACT group at the University of Worcester where I am involved in student recruitment and the delivery of teaching around learning disabilities, a subject that seems to have lost its allure to new students across health and care and, indeed, within the whole social work profession. I have also delivered training to nurses and junior doctors in a local health trust, for which I received an award in 2020. Despite staff seeming engaged with the subject area during training sessions, it remains a matter of deep regret for me that the study of learning disabilities is so marginalised across health and social care disciplines.

My reflective piece has an historical flavour as Chris was born in 1963, when long-stay residential institutions were commonplace, work such as that of Townsend (1962) and Goffman (1963) only just beginning to criticise the nature of institutional care. ‘Institutionalisation’ developed as a model that portrayed long-stay residential solutions, such as those for people with learning disabilities, as being run largely for the benefit of staff and the system, rather than being person-centred (National Health Service, 2019). Carers did not have any profile in a relative’s ongoing care in those days and there were no policies which embraced carers as vital partners in care.

When Chris was young, I cared for him at home with my husband, but it became increasingly difficult for us to cope with Chris’s complex needs, which included aggressive outbursts and self-harming behaviours. Education was another difficult area as receiving an education was not compulsory for children with learning disabilities. This changed with the introduction of the 2001 Special Educational Needs and Disability Act, whereby it became a duty for disabled children to receive an education, whether in mainstream or special schools.

I had managed to get Chris into a local ‘Training Centre’ when his was 4, but only after a battle with the then Mental Welfare Department, who could offer no other provision, and did not have any concept of carers' or children’s rights. At the age of 7, it was recognised by the learning disabilities consultant that my husband and I needed a break from our caring duties. Accordingly, we accepted a month’s respite care for Chris in the local mental handicap hospital, as it was then called. Chris had some familiarity with his hospital as it was where he received some schooling, in what was known as the ‘Hospital School’. There were no local ‘special schools’ as such at the time. Chris came home after that weekend but was so aggressive, particularly towards me, and so distressed that he resorted to self-injurious behaviours such as banging his head on the floor. My husband came quickly home from work and rang the local hospital for advice, and they said to bring Chris back to them. That was the beginning of Chris’s life in institutional care. ‘Doctor knew best’ in those days and, on the doctor’s advice, Christopher was subsequently admitted long term to what was then called a ‘subnormality’ hospital. We did not feel we could challenge the doctor’s opinion and, indeed, had to accept that together we just could not cope—we did not see the doctor’s decision at the time as oppressive, but as caring. There were no alternative services available such as day care centres or shared care programmes and medications were not as advanced as they are nowadays.

The enormity of this life change did not sink in with me for a whilst, and I remember the first time it really struck home was when my husband, Neville, suggested we go out for a drink and I refused because I felt so guilty that I might be enjoying such pleasures whilst my only son, aged 7, was living in a long-stay hospital ward. Over time, Neville persuaded me to socialise more, and we settled into a routine governed by the hospital ‘rules’ at the time. These ‘rules’ were that visiting times were strictly limited to Sundays 2–4 pm, which seems very oppressive now, but we accepted this life as the only one on offer for Chris and ourselves. Fortunately, Chris always seemed happy when we visited on that weekly routine and it became the case that we could take him out for drives in our car, including visiting home. Chris’s clothes came from a communal store—if it fitted, that was what you wore that day! Chris was on a range of medication, but we never felt he was ‘drugged up’ and his behaviours during our short visits with him were not aggressive in the main. Chris always had a ‘mind of his own’ and despite living in a dormitory with 20 or so other learning disabled boys, he always seemed content. Despite such institutions being so often associated with uncaring or even abusive regimes, I cannot say that we ever had any concerns about the way Chris was cared for in the hospital.

As mentioned above, I qualified as a social worker in my forties, and hence I have both lived experience of the care system and also a professional perspective on the changes brought into play over the decades. Contact with social workers has been limited, my more recent interactions having been with social workers visiting to comply with ‘Deprivation of Liberty’ regulations (Department of Health, 2008), who dipped into mine and Chris’s lives to perform their statutory duties, but we never saw the same one more than once or twice, so never had any real depth of relationship or mutual understanding. I have been a single carer since my husband’s passing in 2000 and it was the relationships with social care staff that sustained Chris and I over the years, my critique of small-scale residential care in the community being a largely positive one, pivoted on these relationships we built with local staff over many years. One social care worker, Eddie, was a key worker for Chris for over a decade and it brought me great solace that Eddie was with Chris on the morning he suddenly died and that he has supported me informally ever since, attending Chris’s funeral and always going ‘the extra mile’. I know this is not the usual narrative of privatised residential care, scandals such as those at Winterbourne View (Department of Health and Social Care, 2012) and Eldertree Lodge (Care Quality Commission, 2021), being the images rooted in many people’s minds. I believe it is important to give this current rather different narrative, not least because this unpleasant low-status image of learning disabilities’ work must play a part in deterring new entrants to the profession, a point I shall return to below.

The passing of the 1990 National Health Service and Community Care Act expedited the closure of large institutions such as long-stay hospitals and led to the placing of people with learning disabilities into the community. Chris was lucky and was moved to a large house close to the town and was very happy there until more residents were moved in. He was a bit of a loner and was later moved to a house in a nearby village, where he spent his last thirty years, care generally being excellent and my involvement as a carer being both encouraged and valued, including full involvement with ‘Best Interest’ (Department of Health, 2008) meetings. Chris’s and my only real upset across all these years was when a young man with very loud and volatile behaviours was admitted to the home as an extra resident. This young man did not stay for any length of time and Chris went to live very contentedly in a purpose-built ground floor extension at this home, surrounded by his own belongings (in stark contrast to the institutional days of communal clothing stores!). It is interesting, however, to reflect how adults with learning disabilities, and their parents, have no say over choosing their housemates, which is quite the opposite when non-learning disabled people have an extra member join their household.

From my perspective, the 2010 Equality Act also made a great difference to the lives of so many disabled people—it gave them the right to access the services that the general public use, the right to have ‘reasonable adjustments’ made to accommodate disability and the right to equitable health and leisure services. What a difference this made in terms of opportunities compared with the old system and such a great step forward for the lives of so many people. Chris even went on regular holidays, including a trip to Spain. He enjoyed a range of other activities such as shopping and going out for meals, and particularly enjoyed watching motor racing, including regular hill climb events and special trips to the racing at Silverstone, all activities that would never have happened prior to care in the community policies.

I realise that every learning disabled person and their family is not so fortunate in respect of the commitment and consistency that Chris and I received in both state and private sectors, staff turnover being the scourge of so many social care and social work organisations (Skills for Care, 2021).

Since Chris’s recent and sudden death, I have continued to advocate for better services for learning disabled people and it is a matter of deep sadness for me that so few students I meet at university ever mention wanting a career in learning disabilities or choose case studies/presentation scenarios based on learning disabilities, as if they are still bottom of the professional status pile. Over the years, the value and profile afforded specialist learning disability nurses has diminished, and a lack of interest from students has led to some universities closing courses, which can only be a retrograde step for learning disabled people. I always reflect back on occasions such as when Chris had dental extractions at the local hospital, a highly stressful experience for a person with limited powers of speech and cognition. When he was accompanied by a trained learning disabilities nurse, these traumatic episodes were ethically and skilfully managed, in stark contrast to the times when other dentists and doctors had proceeded to cause great upset and distress, presuming all kinds of things about Chris and not realising, for example, that although he was not articulate, he understood every word that was being said about whatever invasive procedure was being carried out.

As part of my self-appointed advocacy role, I have recently written to two different organisations, one university and one health trust, to find out how they educate and deliver services for people with learning disabilities and offering free input regarding my lived carer experiences, but neither of them even had the decency to reply. I am also trying to encourage my local university to raise the profile about people with learning disabilities and have experienced limited interest. I know that this area of work is not at the top of the political or professional agenda, but my lived experience with Chris and my contact with life-enhancing individuals and services drive me on to seek such equity for all families affected by learning disabilities. I only wish that the social work students I meet on a regular basis were as keen as I still am to push forward for social justice for all learning disabled people. Perhaps a start would be that social work lecturers should acknowledge the lack of learning disability profile on their qualifying courses and find ways to highlight the risks and joys of a career in this increasingly neglected area of social work.

Author Biography

I became a Social Worker in my late forties, and worked in a local hospital for about seven years. I then went to work in the field of Learning Disabilities until I took early retirement. Following the death of my husband in October 2000, I began to look around for some voluntary work, but I was involved at this time supporting my son who lived in a Care Home nearby. Sometime later, Chris had to have dental extractions at the local hospital, remained in overnight, and I supported him through the night. It was because of Chris and his dental treatment, that I was asked if I would like to get involved with delivering training to various Nurses Courses. I am still involved in this area, and also now teach at the University of Worcester as there is little or no training in the field of Learning Disabilities. I am also involved in running the church Choir which I have attended since young age. I take part in an amateur Drama Group, which we do a pantomime each January. I also enjoy reading a variety of books and enjoy travelling.

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