By Carol Boys, Chief Executive
At the end of last year, we shared an update about our World Health Organisation (WHO) Guidance project. I thought it was worth revisiting that topic today to update you all on the progress that has been made.
Background
Many years ago, the DSA campaigned for better healthcare for people with Down’s syndrome. We produced a powerful Report called ‘He’ll Never Join the Army’ which revealed some serious concerns about the healthcare being given to people with Down’s syndrome.
Together with the Down’s Heart Group we gave evidence to an Inquiry into discrimination against children and adults who were being denied life-saving heart surgery. The Inquiry found that there had been discrimination in several hospitals and we worked with the Royal Brompton Hospital to improve services both there and elsewhere.
Current concerns
Sadly, we now have anecdotal evidence that although up to a half of all babies with Down’s syndrome are born with heart defects requiring urgent management, early tests (echocardiograms) are not being carried out routinely everywhere in the UK. This is a scandal and we need to make sure that something is done about it.
We are currently supporting research to discover the extent of the problem. If you have ANY concerns about the care that your child has received, please contact us to tell us your story.
We are also aware of concerns related to the referral of patients with Down’s syndrome to transplant clinics. Do get in touch with us if your child has been refused a referral.
Obviously every patient is different whether they have Down’s syndrome or not but it is illegal to deny access to a treatment on the basis of the fact that a person has Down’s syndrome.
New guidelines
The DSA is working with other Down’s syndrome organisations and medical experts from around the world to develop surveillance and treatment health guidelines for all children and adults with Down’s syndrome.
Our aim is to achieve World Health Organisation recognition for these Guidelines so that Governments cannot ignore them.
Cardiac will be the first of many Guidelines to be completed.
Eminent cardiologists from around the world, with years of experience caring for people with Down’s syndrome, are working to create guidelines that we are confident will receive WHO recognition and be accepted as routine practice in the UK.
Get in touch
As I said earlier, we really want to hear from anyone who has experienced any form of poor care or discrimination. Please drop us an email or call our Helpline on 0333 1212 300.
If you’d like to support our work in creating the Guidelines you can give online or by calling us on 0333 121 2300 or TEXT DSAC21 £10 to 70070.