Jacqui Shurlock, CEO of the CBF, spoke to ITV News about the impact of contact orders being applied to families, restricting their ability to see their relative, after they have raised concerns. Read our full statement here: www.challengingbehaviour.org.uk/news/itv-new...

We are seeing a growing trend in the punitive use of contact orders due to a lack of high-quality support and services in the community which can support people with severe learning disabilities whose behaviour challenges.

If you have been affected by any of the issues raised in this report, you can call the Family Support Service on 0300 666 0126 or email us at [email protected] (Open: Mon -Thurs: 9am – 5pm | Friday: 9am – 3pm)

The Department of Health and Social Care and NHS England must take significant action to address these health inequalities, or people with learning disabilities will continue to die when they should not.

To stop people dying too soon we must see an urgent focus on improved care and coordination for people with learning disabilities – understand how to communicate with individuals and their families, listen to what they have to say, make reasonable adjustments, and make specialist support available.

1 in 4 deaths of people with severe or profound and multiple learning disabilities were treatable – meaning that, they could have been avoided through timely and effective healthcare interventions. This is a huge health inequality and failure of care.

The updated report shows that 40% of deaths of people with learning disabilities were avoidable, double that of the general population.

Following the delays to publication in the first place, this raises questions about how seriously DHSC and NHSE are taking the collection and analysis of data on the deaths of people with learning disabilities. The people who died and their families deserve better.

We’re calling on Government to end the cliff edge, to ensure personalised support is available to families that allows them to focus on what's possible, not just what's available.

Too many families describe the transition to adulthood as something they had to navigate alone, isolated, unprepared and without adequate support for their young persons’ transition from child to adult services. It doesn’t have to be this way.

(5/5)Action is needed now, including addressing the decline in learning disability nurse numbers, ensuring hospital passports are properly understood and used, and consistently putting reasonable adjustments in place.

www.learningdisabilitytoday.co.uk/news/leder-w...

(4/5)There continues to be too many avoidable deaths, including cases where, if better care and coordination were available, people with learning disabilities would not have died. While it is vital that the report is accurate, this must not delay any action taken by the NHS and other organisations.

(3/5)Steps must be taken to ensure data issues like this do not happen again. While it is vital that the report is accurate, this must not delay any action taken by the NHS and other organisations.

(2/5)The data in the LeDeR report represents lives that have been lost, in many cases due to poor care. Given the long delay in approving the publication of the original report, the Department of Health and Social Care and NHS England must ensure the revised version is published as soon as possible.

We pay testament to the determined campaigning of family carers, people with learning disabilities and autistic people which has led to this change. Now the Government must begin the urgent work to co-produce and deliver good community support to make this law a reality.

The law will change so that people with learning disabilities and autistic people cannot be detained in mental health hospitals unless they have a mental health condition that needs treatment.

Our Peer Support Services are here for you. A safe, confidential space to talk, share, and connect with other family carers who truly understand.

Click the link below to find our more.
www.challengingbehaviour.org.uk/for-family-c...