Thursday, 9 July 2009

Cause for Concern “registers”

“How people die remains in the memory of those who live on” Dame Cecile Saunders, Founder of the modern hospice movement.

I was speaking at the 7th supportive kidney care course that Edwina Brown (Professor of Renal Medicine, Consultant Nephrologist), and her colleagues at Imperial College have been running for 7 years. I spoke last year and so putting the presentation together, listening to what other, more expert, speakers were saying and then chatting to the delegates provided a good opportunity to review progress over the past year; there has been considerable progress – thanks to a whole range of people. I would particularly single out Stephanie Gomm (Consultant in Palliative Medicine, Salford Royal), and Ken Farrington (Consultant Nephrologist, Lister Hospital, Cambridge), who led on the production of the End of Life Care in Advanced Kidney Disease: A Framework for Implementation with Bev Matthews (Director, NHS Kidney Care) and Claire Henry (Director, National End of Life Care Programme).

There was good attendance with speakers from a range of disciplines including Sara Davison from Canada and a lot of our leading lights from the UK Palliative Care and Kidney Care communities. Much of the programme was in workshop despite being oversubscribed. I could see that worked well. There was a good range of nurses, doctors, social workers but I am not sure if there were any patients or carers and I would certainly recommend next years course to pharmacists and dietitians who play such an important role in the support and management of conservative kidney care either directly with patients and families or increasingly, by transferring skills and knowledge working with primary care and community teams.

End of Life Care in Advanced Kidney Disease provides a detailed framework for implementation – if you use it, it will do what it says on the tin. A show of hands at the course however revealed only 3 people who have a cause for concern register in their kidney units. At least 2 of those individuals are from the same unit – the Lister Hospital in Stevenage.

Making it happen requires leadership at local and national levels. Local actions include setting up a cause for concern register, establishing a lead clinician for conservative kidney care, ensuring there are key workers in end of life care in each kidney unit and that there are formal links with palliative care and primary care. There are a range of national actions that are also necessary. These include the development of Quality Markers for End of Life Care. This was also recommended by the SHA Pathway Chairs for the NHS Next Stage Review, who identified the need for a national approach in order to raise the quality of care for people at the end of life. The Quality Markers have now been published. I would strongly encourage the involvement of local kidney patient associations in the steering groups for conservative care development and to help and advise in the shaping of these important services. We wouldn’t dream of developing dialysis services without patient involvement and remember conservative kidney care isn’t a no treatment option. In many ways, it requires more care and attention.