Blog
This morning I attended the high-level disability side event on disability inclusive health system organized during the 71st WHO Europe Regional Committee.
It began with The Shalva Band singing ‘A Million Dreams’ from the Greatest Showman. I think it was so beautiful and moving that it brought a feeling of joy and positivity to the event.
The event was chaired by Odelia Fitoussi whose charisma and warmth also set the tone for a welcoming event.
Each person took turns to talk about what their country was doing to improve health for people with disabilities. Mr Nitzan Horowitz, Minister for Health Israel emphasised that ‘leave no one behind’ was not a slogan it was a meaningful commitment to the way we need to plan our health services.
Mr. Dag Inge Ulstein Minister of International Development, Norway, spoke about how non-communicable diseases (illnesses you can’t catch off someone else) for example heart disease, mental health illnesses or diabetes – they can lead to disability. And disability can lead to non-communicable diseases. This cycle needs to be recognised.
This rang true for me in my work with people with learning disabilities on the OK:Diabetes project, we spoke to people who were often on anti-psychotic medicine which made them gain weight, which led to other health complications. Added to this they were often unable to go out to exercise for fear of violence, fear of falls and a lack of means to exercise somewhere safer. This lead to further weight gain and health complications.
Dag Inge emphasised disability and poverty reinforce and perpetuate each other. Through employment discrimination people with intellectual disabilities cannot change their income despite many wanting to work.
WHO Europe regional director Hans Kluge emphasised that most people will experience difficulties in functioning particularly when growing older. He made it clear that disability was everyone’s business as at some point we will all experience it.
Ms. Shirly Pinto, a member of Knesset (Israel’s parliament), signed her presentation as the first Deaf member of the Knesset. She reminded us that people with disabilities often regard medical systems with suspicion and a lack of trust which is often reinforced by their experiences.
Mr. Yannis Vardakastanis, President of the European Disability Forum spoke about the intersection of gender, racial and ethnic background, age, sexuality with disability and how this affects the way people experience discrimination. He emphasised difficulties accessing sexual and reproductive services for many women and girls with disabilities.
I was pleased to hear him emphasise that people with intellectual disabilities and psychosocial disabilities should not be forgotten as they are often the most disadvantaged.
Mr. Jürgen Dusel Federal Government Commissioner for Matters Relating to Persons with Disabilities, Germany. Spoke about new legislation in Germany that if a person with a disability who requires support goes into hospital they have the right to someone with them, a professional or family member, and this visit will be funded. I’m going to look into this further so watch this space…..
Mr David Nuttal Deputy Director for Neurodiversity, Disability & Learning Disability, United Kingdom was next and my ears perked up as this is my area I know the most about. He did a power point and talked about there being 14 million people with a disability in the Uk, that’s 1 in 5. He said people with a disability felt 4 times more lonely than non-disabled people according to a 2020 survey. He also reported anxiety levels were higher for people with a disability at 4.47 out of 10 compared with 2.91 out of 10 for the non-disabled population.
He talked about the Oliver McGowan training that is currently being piloted in the UK but used the phrase that is was training for “staff who are supporting all people with a learning disability or autistic people.” I’m hoping by this he meant, all health and social care staff because of course people with learning disabilities and autism access all forms of mainstream healthcare.
He mentioned there are now Champions in each government department who will take responsibility and have given a personal commitment to drive progress in those areas. I’d like to know who they are!
He also spoke about “responding quickly to lessons learn from emerging data” in health emergencies. This raised a few questions for me. I’ve been writing for a long time about the variability of coding for learning disabilities in health records. We can’t learn very much from health data if we haven’t got the coding right.
I also thought that although we should learn from data and be reactive, couldn’t we also be proactive? When we know we have groups who experience significant health inequalities, often live in care home settings and need regular access to support – couldn’t we make some informed decisions pro-actively about their needs in a health emergency before the data has to tell us how bad it is for them?
Dr. Dorit Nitzan discussed remembering those in rural areas as they are often not the beneficiaries of changes to urban health services. She emphasised how close working with civil society organisations can often be the key to identifying people. One thing that struck me was when she said we shouldn’t just focus on pandemics but earthquakes, floods but also conflict. So many people are disabled by conflicted. Not just in physical injury but in trauma and starvation.
Dr. Natasha Azzopardi Muscat wrapped up by reminding us to ‘Leave no one behind’ and if we really mean it people with disabilities must be at the foremost of our attention when we plan policies.
While much of this might sound like nice words but little action there were many references to the resolution made at the World Health Assembly which urges member states to make changes. This resolution outlines the way states can improve inclusion for people with disabilities and I am hoping this, along with the new Global Report on Disability and Health that we are researching right now, will translate into real change.