It’s not all about Boris Johnson – the UK’s first doctor specialising in profound and multiple learning disabilities will start work in a groundbreaking pilot later this year, as I report in today’s Guardian.
I spoke to Erica’s family, who told me her life was saved after a chance intervention from a specialist “intellectual disability” doctor who had trained abroad.
Erica’s experience has led to a pioneering project in her hometown of Hull in which a new specialist will be recruited by the local clinical commissioning group later this year. And campaigners say Erica’s story proves the need for a national network of similar specialists to help reduce the health inequalities experienced by learning disabled people.
An expert group, convened by former health minister and Liberal Democrat MP Norman Lamb, is researching this idea right now.
The group’s work is timely because of a growing focus on the entrenched health inequalities faced by learning disabled people. Autism and learning disability are priorities in the NHS long-term plan, and a recent NHS-commissioned review of mortality rates shows learning disabled people die earlier and are more likely to die in hospital than the general population. Recent inquests into the deaths of people including Richard Handley, Joe Ulleri and Oliver McGowan reflect the inequality.
While imbibing a cup of coffee at the computer, my Twitter feed led me to an article in the Daily Mail with the strapline, ‘Babies with Down’s syndrome who are given green-tea supplements are less likely to develop facial disorders.’
Well, you could have knocked me over with a tea leaf. This was something. We always knew there was more that we could and should have done for our daughter 26 years ago when she was born with Down’s syndrome.
We had clearly missed a trick. The answer to stigmatisation, exclusion and discrimination lay in a tea bag. If only we had supplemented her diet with green tea, it all could have been so very different. Apparently, new research in Spain suggested: ‘Six out of seven Down’s syndrome sufferers … developed facial dimensions would have matched her healthy peers.’
Where to begin?
Sarah does not suffer from Down’s syndrome. She has the genetic condition, which affects her life in many ways, but if anyone has met Sarah and other children and adults with Down’s syndrome, ‘suffering’ would not be the word that comes to mind. Sarah’s oft repeated phrase, ‘I love my life’ would easily dispel that myth.
I’m also intrigued by the comparison with ‘healthy peers’. Does that make her unhealthy because of a genetic condition? Sarah does not have a disease. The article continued, ‘Researchers hope that normalising the facial features of Down’s syndrome may help to reduce the stigma patients experience.’
‘Patients’? ‘Stigma’? People with Down’s syndrome are not ill and the only stigma that they might experience is the publication of such articles, which perpetuates the stereotypical view of my daughter and others. Increasing the awareness and understanding of Down’s syndrome and the opportunities for people with the condition will do much more to reduce any stigma.
Sarah has facial features and physical characteristics that are more common in people with Down’s syndrome, but she looks more like us, her parents, than others with the condition. Her physiognomy remains unmistakably that of a young woman with Down’s syndrome and that’s who she is. Her Down’s syndrome is a part of her very being so we do not wish to take that away from her. We would only be changing the way she looks to make her features more acceptable to other people. In any case, her unique character is so prominent that her features become irrelevant.
Of course, supplementing diets is not a new idea; over 20 years ago parents were experimenting with TNI (Targeted Nutritional Intervention) whereby supplements of vitamins, minerals, amino acids and digestive enzymes were given to children with Down’s syndrome. The programme was supposed to help cognitive development, clarity of speech and it was even claimed that there was an improvement of facial features. Even then, the term ‘improvement’ made me me somewhat nervous, as the term can only be subjective and dictated by society’s desire to make everyone appear ‘normal’.
Are we now still are trying to eradicate the physical characteristics as a way of denying the diagnosis? Everybody has his or her own individual personality and physical make-up. People with Down’s syndrome are all unique individuals with their own personalities, family backgrounds and aspirations that make them who they are. Every individual person should be valued for who they are, not what they look like.
Anyway, I had pondered too long over this preposterous article and so by now my coffee had gone cold. Maybe for my next beverage, I should forget the caffeine and imbibe some green tea. I had, after all, always wanted to look like George Clooney. Apparently, a nightly cup of Earl Grey can create a noble look, a steaming demitasse of Darjeeling before bed might turn me into a Kit Harrington doppelgänger and who knows the effect of a pint of Lapsang Souchong a day might achieve?
No…on second thoughts I think I’ll stick to the java and remain just who I am.
Guest post by Ross Hendry, chief executive of Spurgeons Children’s Charity
New research, which we launch today, paints a picture of far too many young families struggling.
Parents with children under the age of 18 are increasingly anxious, according to Spurgeons’ Parent Report, and many feel that there is little support available.
The research shows half of parents worry their children have low self-esteem or are unhappy (46%) or are being bullied (46%)*; whilst 42% of parents think there is little to no support available from statutory, community or voluntary services to help with family challenges.
And it is many of the most vulnerable who are struggling the most. The ones who cannot or do not have a strong, stable and supportive network of family and friends to turn to. These are the families we work with, day in, day out – their children are among the 4 million living in poverty in the UK today. They are the families for whom support seems very distant and hard to attain just when their needs seem to be increasing.
What’s important is that families get the support they need when they need it. And that’s where charities like ours come in. Spurgeons Children’s Charity is driven by its mission to improve the lives of families and children who are struggling to cope; and to see every child given the chance of a hope filled future.
It is 150 years since we were first founded, but we still work at the heart of communities to improve the life chances of some of the most vulnerable children and families in England. Our focus is supporting families who struggle to support themselves through intervention and help that centres on the child.
The reality is, despite the immense wealth and opportunities for social mobility, life for some families is as tough today as it was when we were first established. Inequality today may look different; we may know more about causes and solutions; we may spend more time talking and writing about it; but it is still an enduring social and economic scar on our society.
We offer a range of different services across the country. For example, our 23 children’s centres support parents with young children to access the help they need, ensuring poverty and deprivation don’t become barriers to a better future. We work with local partners in communities with high levels of deprivation across the UK, supporting parents and their children from pre-natal stage up to the age of five.
When parents need to develop new strategies for dealing with issues; or they feel they maybe aren’t coping as well as they could, our support worker teams are there. Sometimes just to listen; but often to provide practical support and advice too. There are a range of parenting courses; opportunities to stay and play and a chance to meet and talk with other parents.
The chance to access peer to peer support can be invaluable and a life line for many parents who often feel alone. This is true for both mums and dads and we’re keen to recognise the important roles fathers play in their children’s lives. Our Saturdads project, which started in 2009 and worked with 89 dads last year alone, helps fathers develop stronger, positive relationships; build peer support networks; and generally build their confidence as a parent. Too often public funded services are portrayed as places of dependency when the reality is a timely intervention can be the route to flourishing, maturity and development for parents and children.
The Parent Report we publish today gives us an opportunity to compare the views of the wider parent population to our own insight. From parent feedback at our services, through to safeguarding reporting, we are able to draw out comparisons and identity some common themes. What we do know from the work taking place is that it’s not always easy for families to reach out.
All too often, parents are afraid to engage. For whatever reason, whether its concern over how they will be perceived, or feeling like they have somehow failed, we’re often the last place they turn. It’s not uncommon for us to be told by parents that they wished they’d reached out sooner. But the question we need to ask is ‘why aren’t they?’
We need our services, and those offered by others like us – from government, charities, schools and GPs – to be recognised as the safe and reassuring places we believe them to be. Where parents can take their children and be free from judgement at a time in their life when they need it most.
It’s only fair that we all accept some responsibility with this – if parents don’t feel that they can access the support available, what can we do differently to help them on their way? More awareness maybe; more accessibility for the isolated and hard to reach groups most definitely; but maybe it’s more than that.
In a world where they are so many expectations and pressures, living up to a perfect ideal can make a tough job even harder. From our part, we want to ensure there is always someone there to support families – especially those in greatest need – with good information, advice and meaningful support.
About the research All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 1,842 GB parents with children under 18 years of age. Fieldwork was undertaken between 21st – 27 April 2017. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+). * When asked about the three issues they are most concerned about for their children, either now or in the future.