Taking forward the findings of the Confidential Inquiry into premature deaths of people with learning disabilities: what is happening?

In March 2013 the Confidential Inquiry into premature deaths of people with learning disabilities reported its findings to the Department of Health. One year on, a number of initiatives are in place to reduce premature deaths in people with learning disabilities. This conference shared examples of actions being taken nationally, regionally and locally to take forward the findings and recommendations of the Inquiry.

Welcome to everyone at today’s conference

Pauline Heslop, Manager, Confidential Inquiry into premature deaths of people with learning disabilities

 A reminder of why we are here:

Department of Health: Progress report

Jon Rouse, Director General, Social Care, Local Government and Care Partnerships, Department of Health.

NHS England: Progress report

Dominic Slowie, National Clinical Director for Learning Disability, NHS England

Matthew Fagg, Deputy Director for Reducing Premature Mortality, NHS England.

Public Health England: Progress report

Gyles Glover, Co-director of the Improving Health and Lives Learning Disabilities Observatory, Public Health England

Plenary Presentation Helen Toker-Lester (Office document, 311kB)

Helen Toker-Lester, Joint Commissioner (Learning Disability), Devon County Council and Northern, Eastern and Western Devon Clinical Commissioning Group.

Tony Fahy, General Manager, Learning Disability Specialist health Services, Devon Health and Social Care Partnership

A joint approach to whole system change in Calderdale

Sarah Antemes, Head of Commissioning – Specialist Care/Learning Disabilities, Calderdale Clinical Commissioning Group

Workshop 1: Identifying people with learning disabilities

Julia Kew – Leicester Learning Disability Screening Tool

Saoirse Read – Risk of Admission Patient Alerts (RAPA) - How this flagging system works for people with a LD in Derriford Hospital.

Heather Burns – The Sheffield Case Register

Workshop 2: Involving people with learning disabilities as partners in improving services

Workshop 2 Presentation 1_Liz Wright (Office document, 6,214kB)

SpeakEasy N.O.W. Health Checkers  – My Worcestershire Health Plan

Workshop 3: The provision of reasonable adjustments

Linda Swann – Reasonable adjustment care plans in Cheshire

Daniella Rudio-Mayor – Reasonable adjustments made via the Choose and Book system

Lisa Burgin – Cancer screening in Derbyshire

Christopher Griffiths – Improving general hospital care of patients who have a learning disability – The All Wales Care Bundle

Workshop 4: Pick and Mix

Deborah Gallacher – ‘Big Health’ day, Peterborough City Council

David Warner – The Complex Health Intervention Pack (CHIP) in Sussex

Tony and Tricia Prosser – A multi-media, interactive, I-Pad based guide to an individual in Humberside

Sam Sly– Beyond Limits – providing personalised support using Individual Health Budgets to people leaving Specialist Hospital

Workshop 5: Decision-making under the Mental Capacity Act

Claud Regnard – the ‘Deciding Right’ initiative

Joanne Brown – the Mental Capacity Assessment and Best Interests Decision-making Tool in South West Yorkshire

Workshop 6: Supporting people with learning disabilities

Sarah Clayton - The Living University of postural care

Jo Brewin – Total Communication Now in South Devon

Susan Guthrie – identifying the risk of choking for adults with learning disabilities

(Unable to be present at the conference)

Rachel Munday - Jump Cuts DVD training material

Q&A Panel

1. Why are we still sorting our problems we were sorting out 32 years ago?

It is sad that things have not got better. It hard for some people to see how much you care for people with learning disabilities. Society does not value people with learning disabilities in the same way as those without learning disabilities. People need to look at human beings not disabilities.

We all need to treat people as individuals. The government needs to focus on this difficult issue and to provide appropriate investment. Investment needs to be on inclusive services not institutions.

People with LD not visible in the media, in culture and in art. Until they are, consultants and other medical professionals won’t see them as real people.

2. What can we learn about delivering training on learning disability issues in general and more specific issues like managing epilepsy?

Drama and the arts can be very powerful in helping people understand and appreciate the issues.

3. How will we ensure the expertise, skills and experience of families and carers will be captured in clinical case note audits?

We (NHS England) will look at how to do this. Monitor has a clinical audit framework which may be helpful. The CQC already applies this principle to all of its inspections, by involving experts by experience.

4. How can people with learning disabilities and family carers be effectively involved in service review?

Some organisations are already involved in healthwatch and working with CQC on their inspections and reviews.

There could be an annual feedback from for family carers to give to professionals. This could take information from lots of sources. However, you would need to pay people and care givers properly for this.

It would also be helpful to involve people who do not normally get to meetings to find out their needs.

5. What guidance can panel members give to identify people with learning disabilities in flagging systems?

(Background: We are still encountering barriers in accessing information from GPs registers to identify patients with learning disabilities to enable acute trusts to populate flagging systems.

Practice managers quote “Data Protection Act”, “Caldicott” and want Acute Trust to write to all people with learning disabilities  to consent to inclusion on Trust’s flagging system but won’t tell us who they are to allow us to write to them.

LMCs are telling GPs that Acute Trusts are holding this data illegally. Can some clear and unambiguous guidance please be issued)

People can use the Equality Act 2010 to identify the reasonable adjustments that people need and then follow up with them.

6. What would the panel like to happen now as a result of everything you have heard?

People should work harder to provide better care. We hope that people have been inspired to make a difference. We should continue to work together and use everyone’s skills to make a difference. Society should care, not just a few families of people with learning disabilities.

We should have data shortly to give an accurate picture of what is happening across the country.

7. What is the standard that you are measuring with CQUIN’s mentioned this morning? (Dominic)

8. Is there a need for clear guidance on data sharing within and between organisations? (All)

9. As this is such a serious issues is it not time for the Department of Health and NHS England to start telling professionals what they must do to keep people with learning disabilities safe and healthy instead of just asking them nicely? (Dominic)

10. Are there plans to produce NICE guidelines for healthy outcomes for people with learning disabilities? (Dominic)

11. Why is the DES scheme not audited; there are so many variations in quality of check delivered? (Dominic)

12. What are we going to do about epilepsy? It is a significantly prevalent long term condition which complicates and shortens lives. I am seeking progress through awareness of living with the condition and having a learning disability. Excellent quality co-produced training; Anyone willing to join me in achieving this? (All)

13. Will all the improvements and aims for prevention, also include people with autistic spectrum conditions, including Asperger’s Syndrome? (Dominic)

14. How will national death rate studies distinguish between expected deaths related to complexity of clinical condition and those deaths that are considered avoidable? The avoidable, premature deaths need to be tackled as priority. (Dominic)

Summary (Dominic Slowie)