March 2013: The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD).
The Norah Fry Research Centre based at the University of Bristol has now published its Final Report, which should be of interest especially to the parents and carers of persons with learning disabilities. The full report is available as a PDF file here.
The Foreward to the report concludes: “We hoped to find that people with learning disabilities were living long and healthy lives to no lesser extent than those without learning disabilities. Our optimism has been quashed, but we have also been heartened by the many family members, carers and professionals who have been supporting people with learning disabilities creatively, optimally and with the person themselves at the centre of their care. We need to learn and share what is working well and to shine a light on what is possible, as much as identifying what is wrong. It has been a privilege to have been a part of so many people’s lives. People whom we would never meet alive, but who we came to know so well once they had died. We have anonymised their names in this report, but would like to do justice to their experiences, the lessons they have taught us andthe reflections they have given us. It feels a tall order. But we hope that, in this report, learning from their lives will make a difference to others living in the present and with lives yet to come. We would like this report to leave a legacy of action, with the imperative to reverse the unacceptable situation in which the NHS is not being provided equitably to everyone based on need.“
The ‘legacy of action’ is defined in the report’s 18 recommendations:
1. Clear identification of people with learning disabilities on the NHS central registration system and in all healthcare record systems.
2. Reasonable adjustments required by, and provided to, individuals, to be audited annually and examples of best practice to be shared across agencies and organisations.
3. NICE Guidelines to take into account multi-morbidity.
4. A named healthcare coordinator to be allocated to people with complex or multiple health needs, or two or more long-term conditions.
5. Patient-held health records to be introduced and given to all patients with learning disabilities who have multiple health conditions.
6. Standardisation of Annual Health Checks and a clear pathway between annual Health Checks and Health Action Plans.
7. People with learning disabilities to have access to the same investigations and treatments as anyone else, but acknowledging and accommodating that they may need to be delivered differently to achieve the same outcome.
8. Barriers in individuals’ access to healthcare to be addressed by proactive referral to specialist learning disability services.
9. Adults with learning disabilities to be considered a high-risk group for deaths from respiratory problems.
10. Mental Capacity Act advice to be easily available 24 hours a day.
11. The definition of Serious Medical Treatment and what this means in practice to be clarified.
12. Mental Capacity Act training and regular updates to be mandatory for staff involved in the delivery of health or social care.
13. Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) Guidelines to be more clearly defined and standardised across England.
14. Advanced health and care planning to be prioritised. Commissioningprocesses to take this into account, and to be flexible and responsive to change.
15. All decisions that a person with learning disabilities is to receive palliative care only to be supported by the framework of the Mental Capacity Act and the person referred to a specialist palliative care team.
16. Improved systems to be put in place nationally for the collection of standardised mortality data about people with learning disabilities.
17. Systems to be put in place to ensure that local learning disability mortality data is analysed and published on population profiles and Joint Strategic Needs Assessments.
18. A National Learning Disability Mortality Review Body to be established.
= = = = = = = = = = = = = = = = = =
Rescare will report on reaction to the CIPOLD Report, and on any progress towards the meeting of its recommendations.