Within Issue 91

Winter is upon us and with it comes our Winter edition of PMLD Link. This issue focuses on health and its impact on people who have profound and multiple learning disabilities / impairments. For many families, caring for someone with PMLD means that health issues dominate their lives as they enter a world of new jargon, medical procedures, and an array of professionals. Having a good health experience can make an enormous difference to the lives of people with PMLD.

The second annual LeDeR report and the subsequent government response have shocked many of us. It is clear that unless we do something to improve the health response for people with learning disabilities they will die 20 years earlier than their non-learning disabled peers. Monitoring premature death is not sufficient – action on change is needed. The article by Michael Fullerton looks at these documents and discusses how the recommendations relate to the PMLD population. We have included an article by Hannah Crawford on Dysphagia – one of the causes of premature deaths on the PMLD population. The contribution from Inclusion Europe shows that work is being done across Europe to raise the profile of those in the learning disability community with the most complex needs.

The PMLD community has responded to many of the health issues for this population by developing a set of standards to be used in services across the country.

We would like to thank the two parent carers, Alison Pettitt and Emma Murphy who shared their stories about their sons. Both are very moving accounts and highlight the importance of both physical and mental health issues. The importance of listening to parents and responding in creative and flexible ways come over so strongly.

We have included three articles to broaden our understanding of how health services work. One is an article by Mel Bradbury and Jill Burton explaining how health services are commissioned to meet the needs of the local population and focuses in particular on the PMLD population and listening to the voice of carers. The second is an article written by Michaela Marr, a liaison nurse working in hospitals, and Suzanne Nichols, a liaison nurse working across primary care focuses on how they have worked in partnership to ensure a more effective and comprehensive coverage of the learning disability population. Sally Wilson has written and article explaining what NEWS and SBAR are, and their importance in responding to health concerns within the broader context of an individual.

Both Jo Grace and Lynsey Robinson have written articles on sensory stories and working in a creative and exciting way with individuals who often process their world through their senses rather than relying solely on cognitive methods. Their articles remind us that ‘health’ encompasses mental and emotional well being as well as physical health.

We are also mindful that PMLD Link is now 30 years old and many articles on Health and Wellbeing have been written over those years. We have identified those articles which have appeared in the past 10 years which Rob Ashdown has collated in his article. All of them can be found on our website: most issues of PMLD Link are downloadable for free on the PMLD Link website by anybody but the issues of the past three years are available only to members (i.e. paying subscribers). If you cannot access an article and need to know more, please contact us. The articles have been grouped according to their main topic but it is worth noting that a few articles arguably could have been placed in two or more groupings. For each article the authors’ names and article title are given with the PMLD Link journal issue number and the starting page shown in brackets.