Who will remember who I was when I don’t remember?

One day last week, I spent a pleasant evening with a Chief Executive friend of mine. We had long promised ourselves a catch-up session over a pint, and last week we finally managed to arrange a time to do just that. I have to say at £4.90 a pint there was more conversation than drinking! It wasn’t a high-powered intense conversation about what was happening in the local health economy, or an opportunity to vent our feelings about national politics, although we did occasionally stray into such areas, it was just what I would call an ordinary conversation. Amongst other things, we talked of such grand things as what our respective children were doing, of the pleasure of having grandchildren (he had six, I have 11), and the never-ending task of maintaining old houses.

It was lovely to just step off the merry-go-round for a short while. In a busy world, where communication is often rushed or made up of emails, tweets, Instagram and so on, simply being able to just talk face to face without business intruding was refreshing and uplifting. It made me realise just how many of my conversations are work related, or if not work related, limited to a very small group of friends. Today is Mothering Sunday, and this morning I reflected upon this experience and wondered how many families would be celebrating a mother’s presence in their lives through physically being together. I know I won’t. My mother lives in Cardiff and I live in the North West. Even if it had been possible to travel down I’m not sure I would have. We haven’t celebrated Mothering Sunday in a face to face way for many years. Of course, I have sent a card, and a present, and will later Facetime my mother, but I guess for both of us it’s not quite the same as being physically present. 

I love my mother to bits and there is no problem with our relationship. She has always been there for me and I have tried to be there for her when she has needed me. As she gets older that becomes a more frequent occurrence. Thankfully, I come from a large family and my many brothers and sisters are also there to support both my mother and father as they grow older. That is not always the case for some people. Last week I read a report published by the Ageing Well Without Children organisation that talked about an important, but often forgotten, group in society who do not have children and are now growing old and more vulnerable. 

The report noted that there were more than a million people aged over 65 who are without children. As a group they are unsupported by family and have a higher risk of isolation, loneliness, poverty and the health problems these conditions can give rise to. Childless men are more at risk than women, and are more likely to have worse health, worse health behaviour and higher mortality that fathers. It’s reported that some 90% of LGBT people don’t have children, that 30% of people without children are more likely to be carers of their elderly parents, and 85% of people with disabilities don’t have children. The report also noted that the number of childless people is likely to double between now and 2030. 

The UK, like other parts of the world, is facing a growing situation where the number of older people in the population is growing far faster than might have been the case 20 years ago. People are living longer but are also increasingly presenting with often complex and chronic health problems than in times gone by. Consequently, there are more older people requiring care than there are adult children to provide this. Research undertaken in Wales a few years ago showed that those living without children generally found ways to develop non-kin relationships and friendships and valued their independence. Nevertheless, nearly all in this group lacked the informal support that families can bring as they grew older. Sadly, nearly all those in the study were in residential care or a long stay hospital at the end of their lives.

   

Unfortunately, the evidence on the mental health and well-being of older people without children is rather mixed. Some studies appear to show that there is little difference between this group and those who are parents, whereas other studies show higher levels of depression and anxiety. This may well be down to factors such as a person’s marital status (single men are seen to be more at risk), the degree of social and or financial capital they enjoy and the extent of their next-of-kin and non-kin networks. Kirsty Woodard, the report’s author, notes that implications for health and social care are brought into sharp focus when thinking about the increasing numbers of people living with dementia, and who might also be childless. This week’s blog title comes from the question she has heard many times when undertaking her research – ‘who will remember who I was when I don’t remember’.  On this day in particular I hope you dear reader, whether you have children or not will remember your mother, whether they are still with us, living far away or have passed on. We all have a mother, and they are special people one and all.

Memories of a great woman who brought hope to so many

Last week saw the sad death of Mary Warnock. Although, quite rightly, many of the reports of her death focused on the work she had undertaken in the field of ethics and, her work on human fertilisation and embryology - this world-leading work led to the establishment of the Human Fertilisation and Embryology Authority in 1991; however, it was her work in education that came to my mind, and her death and the subsequent reporting of her life made me think back to my early years as a nurse. 

When I qualified as a mental health nurse, I spent my initial post-qualifying period working as a staff nurse at Cefn Coed Hospital Swansea. Due to the travelling, (a daily 76-mile round trip), I left there to work as a staff nurse in the West Wales Learning Disability Service, near Camarthen. It was a time of great change, as Care in the Community was introduced. This was a well-funded and politically supported initiative to close long-stay hospitals and relocate services to more community settings. Despite not having a learning disability nursing qualification, I was appointed as Charge Nurse after just one year’s experience. I don’t think this was because I was particularly able or qualified, more a reflection of how difficult it was in those days to recruit nurses to work in rural settings.  

As part of my ‘induction’ into the role of a Charge Nurse, I went and spent two weeks at Ely Hospital Cardiff. Younger readers of this blog may well not know the role Ely Hospital eventually played in both the care of people with learning disabilities, the training of healthcare professionals, and the development of systematic reviews of the quality of care provided within hospitals. Sadly, like many new initiatives in health care, these developments occurred because of the abuse and neglect of people, many of whom were at their most vulnerable, by those charged with caring for them. 

In 1967, the story of abuse was picked up by the News of the World newspaper. At one time this was the highest selling English language newspaper in the world. Its main approach to journalism was mainly based around sensationalism, and it had a reputation for exposing national or local celebrities’ drug use, sexual peccadilloes or criminal acts. The allegations were first made by a Mr Pantelides, who worked at the hospital as a nursing assistant. He could not get anyone at the hospital to listen to his concerns and eventually took the story to the newspapers. 

The story led to the setting up of the Ely Inquiry in 1969. This revealed a hospital that was isolated from other parts of the NHS, where there was very little staff training (the only training event they could find since 1950 was of a Charge Nurse who attended a course on nursing in the event of an atomic war) and overcrowded wards. The Ely Hospital report is still regarded as being a significant catalyst for the development of contemporary learning disability services. The report was followed in 1971 by the White Paper: Better Services for the Mentally Handicapped. 

During my two weeks at Ely, I saw much that dismayed me, and I remember writing a report (we didn’t have computers in those days) in which I tried to carefully articulate my concerns. Sadly, like Mr Pantelides, I am not sure anyone paid any attention to what I had written. Thankfully, following the introduction of Care in the Community, Ely Hospital went into decline and was finally closed in 1996.

Mary Warnock also chaired a committee of inquiry into the rights to education of children with a learning disability. The inquiry ran from 1974 – 1978 and produced a powerful report that in my mind was just as important at the work she undertook in the field of human fertilisation. Perhaps these days some might see her conceptualisation of children with learning disabilities as being ‘God’s children’, and that they, like all children, walked on a single road, but reaching different stages along it, as outmoded. Some might disagree with the metaphor she used, but what it allowed was for the articulation of the need to recognise a ‘continuum of need’ upon which individual children could be assessed according to their own specific needs and not simply through some diagnostic and often meaningless categorisation. As such, she advocated that children with a learning disability should be placed in mainstream schools, who should make special provision in responding to each child’s specific needs.

Although her recommendations were enshrined in the 1981 Education Act, it was a time of financial austerity in the UK and many of her recommendations were not adequately financed and as such implemented effectively. Thankfully, there have been many changes in the way education is provided for children with special educational needs and disabilities (SEND). The Children and Families Act (2014) brought a clear expectation that such children should be taught in a mainstream school, and that every teacher is a teacher of children with a SEND. I never met Mary Warnock, but I am sure she would have been pleased to see such inclusion finally being realised, albeit so long after she made her recommendations. She was one great woman, and a woman whose life’s work has changed the lives of millions of other people across the world. May she rest in peace.