Palliative care workshop October 2008
In October 2008, the MS Society held a Palliative Care Workshop with Professional Network members and people affected by MS. This explored the key issues for the Society as we develop our national programme for palliative care.
Eve Richardson, Lucy Sutton and Simon Chapman of the National Council for Palliative Care (NCPC) spoke on the day, along with Maggie Bisset, nurse consultant in palliative care, and Revd Dr Barbara Chandler, consultant in rehabilitation medicine.
Their presentations, and the subsequent discussions, raised many issues which need to be tackled if palliative and end-of-life care for people with MS is to be improved.
Defining the ‘end of life’
Input from every quarter highlighted the need for an agreed terminology and definitions of ‘palliative’ and ‘end-of life’ care in relation to people with MS. Current use of language can be confusing for people affected by MS as well as some professionals. Experiences can lead to differing understandings, whether personal experience, or the media’s presentation of the subject. Either way, they might be outdated or unhelpful in either improving services or accessing those already available.
There was a strong consensus to work towards ‘normalising’ death as a part of life – in the wider society. This might link in with broader ‘living well, dying well’ and ‘staying healthy’ strategies.
Mapping services
It became apparent from discussions on the day that even those most at need of specialist palliative care might not find out about available services. Although many areas do lack adequate specialist palliative care services, there may also be care professionals and people affected by MS who are unaware of what is available locally. The Workshop felt that all specialist services should be mapped, to build awareness both locally and nationally.
Timely referrals
Without knowing what services are available in an area, it is inevitable that referrals are not always timely. But other issues affecting this were also brought up. The interface between palliative care and other services is not always clear – and even those with an awareness of services could cite examples where palliative care needs could have been met in a more timely way.
Standards and frameworks
It was felt that information for all, best practice sharing, training and further work around quality markers and outcomes might all help address problems around referrals and service provision. The group highlighted the need for wider use of the existing Gold Standards Framework for palliative care and other tools that could improve the quality of the patient experience. It was felt that quality end of life care should be available wherever the person chooses and 24 hours a day.
Skills and training
Information for GPs and social services was felt to be a priority, as well as appropriate training for staff and volunteers; in particular, on issues around cultural diversity and palliative care. More opportunities for shared practice would be welcomed – for those working in all areas of health and social care.
Next steps
Following the workshop, Sheila Manley, Strategic Lead for Palliative and end of life care, has reported back to those who attended that the MS Society has set up a working group to develop a strategy for palliative and end of life care.
Recommendations will be presented to our Board of trustees in February. This will set the directions for taking work forward in relation to palliative and end-of-life care for people affected by MS.
