World Down Syndrome Day is celebrated on the 21st of March each year. This year the theme was ‘We decide’ and focused on involving people in decisions that are made about their lives. That day of celebration and awareness raising comes just three days after the Care Quality Commission published their report, Protect, respect, connect – decisions about living and dying well during COVID-19, which found significant and concerning variation in people’s experiences of decisions about withholding cardiopulmonary resuscitation (DNACPR) during the pandemic.
Interestingly, and perhaps an area for providers and professionals to reflect on, most providers and staff reported they were not aware of inappropriate DNACPR decisions, or DNACPR decisions being applied to groups of people, there was a very different response from people who use services and their families and carers; they felt that ‘blanket’ DNACPR decisions had been used. Why the polarised opinion, I wonder?
The Commission’s Chief Inspector of Primary Medical Services and Integrated Care at the Care Quality Commission was quoted as saying: “Personalised and compassionate advance care planning, including DNACPR decisions, is a vital part of good quality care. Done properly, it can offer reassurance and comfort for people and their loves ones – before and during difficult times.”
Why do staff and professionals have such a different perspective from families? Is it, perhaps, that families see the person, they see who they are and what they offer the world? Or is it the converse, that professionals and staff have a more realistic idea of what would be in the person’s best interests and know when resuscitation attempts would be futile? I am not sure I know the answer, but hope people think about that question with an open mind.
My own children spent many years living in residential special schools, alongside children with either learning disabilities or emotional, social and behavioural difficulties. They were taught to ride their bicycles and to build sandcastles by teenagers who they simply saw as older children, not as people that were different or lesser people.
I was surprised that when my eldest daughter started medical school she was one of the few people that had any experience of someone with Down Syndrome. She and her brother both had children with Down Syndrome in their primary school classes and just accepted them as they were. If Katy pulled my daughter's hair she got shouted as, just as any child doing so would have been; she also got the birthday cake and joined in playground games, just as any other child would. I’m not sure my son really registered Immy during primary school; she was a girl and he didn’t like girls or play with girls very much – my how that changed! Now he greets Immy in town, whenever he sees her and she offers a two-cheek 'air kiss' before telling him about her work in a garden centre. She talks knowledgeably about her siblings and her cat. She went to college and has a boyfriend, she also has a very charismatic personality and can light up any room she walks into. She is confident and outgoing, without being precocious, a delightful young woman.
I wonder how many people working in health or social care know about the United Nations Convention on the Rights of Persons with Disabilities? How many providers map their service provision against the charter? How many audit or review equality of access and quality of care? It shouldn’t take a CQC report highlighting communication failings and inequalities for the systems to look at how well they are doing, should it? The report about DNACPR highlights one issue, but let's not pretend everything else is equitable and easy for people with learning disabilities to navigate.
The barriers to accessing health services include problems with communication, inadequate facilities or rigid procedures, and lack of interpersonal skills amongst mainstream health professionals in caring for people with learning disabilities. A specific example is around screening for breast cancer. Women with a learning disability are living longer and often do not have children and therefore, they are at increased risk of developing breast cancer. Despite this being known, only one-third of eligible women receive invitations to mammography screening. Does a women of fifty-four deserve to be excluded from routine breast screening because the system has not been sufficiently responsive to her needs or because those who should be supporting her access dismiss her as not worth preparing for mammography?
Going back to life lived on the campus of a residential school, it is very clear to me that there were real inequalities that were accepted as being in people’s best interests. When I was pregnant with my youngest child, I had a due date that coincided with the due date of a fifteen-year-old girl with moderate learning difficulties. Carly was a delight and we spent many an afternoon sipping ginger beer and moaning about the heat together. There the similarities ended.
I had a lovely community midwife called Helen who provided my antenatal care at home and then join me at the hospital to deliver my baby. Carla had to catch the bus the hospital in the next town for every appointment, which took a long time, and was expensive. She was automatically placed under consultant led care. I was given a choice despite having poor obstetric outcomes previously. It wasn’t about the risk – she was much younger, much fitter and much lower risk than me. It was about judgement.
Every healthcare professional I spoke with was smiling and reassuring, offering congratulations and planning my care with me. Carla faced constant pressure to abort her pregnancy. She was told she wasn’t really capable of being a mother and the baby might end up being taken away. I tried knitting and listened whilst she cried after every appointment. I was celebrated as a mother to be and she was made to feel bad.
I went home two hours after delivery whilst Carla was made to stay in hospital whilst ‘things were sorted out’ despite having a very good parent figure that she was living with. She didn’t understand what needed sorting out; nobody explained to her.
It was assumed my baby would be breastfed, so I was offered contact with the local NCT breastfeeding counsellor and regular visits from Helen, my community midwife. Carla faced the assumption she would bottle feed. We’d talked about breastfeeding during our pregnancies and she was keen to try, not least because it was so much cheaper. She had minimal support for this, but was made to practice making up bottles, “in case feeding the baby herself didn’t work”. She was told it was impossible to know whether baby was getting enough milk, so it might be better to breastfeed so ‘they’ could keep an eye on what baby was having.
She had doubts cast and barriers created at every step of her journey into motherhood, but somehow overcame them all. Baby Jamie thrived and grew. Carla married her boyfriend and they are together still. They had two more children who are now nearing adulthood and live a fairly simple, but contented life. Carla was always a good mother, despite the challenges the health and social care system put in her way.
Scior & Werner, (2015) suggested that misconceptions about the capabilities of people with a learning disability may be widespread. Misconceptions and negative attitudes can be a barrier to people with a disability living the lives they want and may underrate their capabilities. That in turn can lead to ill-informed judgement and a focus on what they can’t do rather than what they can do. The process of managing ‘them’ as a different type of being, the depersonalisation of care, the dismissal of anyone as not worthy of involvement impacts on decision making by health and social care professionals at all levels.
In order to judge the quality and value of life and design services to meet their needs, we surely have to understand who we are taking about.
I guess there is scope for individual reflection about our own pre-conceptions and experiences of people with learning disabilities. Has our lack of direct experience clouded our ability to consider what each person is capable of and how valuable their lives can be? How can we as health and social care professionals help redress the imbalance?
