About Down's Syndrome : Health Alert!

There have been many positive developments around awareness of the health conditions more common in people with Downs syndrome and their treatment. More widely, health professionals now have a duty to make reasonable adjustments for their patients with disabilities to ensure they have the same access to health care as everyone else. For people with Down’s syndrome, reasonable adjustments may include longer appointments, easy read information and support around consenting to treatment.

However, we are very concerned that, despite our ongoing health campaigning which started in the 1990s, there have been a number of recent high profile cases of preventable deaths of people with Down’s syndrome.

In the first half of 2019, the Department of Health and Social Care held a consultation on mandatory learning disability training for health and care professionals.

In our consultation response, we said that the proposal to introduce mandatory learning disability training for health and social care staff is a welcome development, but is only one, small, part of the action required to address the unacceptable health inequalities experienced by people with a learning disability.

Other actions also required include:

  • Increasing the powers of the LeDeR programme, so that their recommendations can be enforced by law
  • Strengthening pre-qualification learning disability training for relevant health and social care professionals
  • Where failings in the quality of care are found, especially in the case of avoidable deaths, criminal proceedings should result in the prosecution of the individuals and agencies involved. This must include charges of manslaughter on an individual or corporate basis, where the failings are serious enough to meet the criteria to bring this level of prosecution

In its response to the consultation, published in November 2019, the Government promised:

  • All health and social care staff will receive relevant training on autism and learning disabilities
  • A trial of the new staff training package will begin in 2020, backed by £1.4 million of government funding
  • A series of trials will run first, followed by a wider roll-out
  • People with learning disabilities and autism will be involved in the training

What happens next?

The Health Alert! Campaign report, which includes powerful testimony about people’s experience of the healthcare system is now available on our website. We will be sending this report to key stakeholders and would ask our members and supporters to discuss this issue with your local candidates and MPs.

We are also in the process of developing a specific training package on Down’s syndrome for health care professionals.

We are always looking to hear from our members about their experiences of accessing health care (good or bad), as they help us campaign for change in cases like this.

You can share your stories via email to info@downs-syndrome.org.uk or by calling our Helpline and speaking to one of Information Officers on 0333 12 12 300.

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