As I reflect over the last year I am aware that not only have things been changing rapidly in the world of End of Life Care but also in the world at large. These are difficult and stressful times with national and international developments constantly unfolding in front of us. Social media, TV and the internet ensure we know in real time exactly what is happening around the world. Despite this unfettered access to information and technology we still can’t seem to muster the same passion for people with care needs and ensure they are provided with the right support at the right time, without issues of cost or availability of provision. Anxiety, concern and uncertainty now take root in a far greater proportion of the population when they were once confined to those in greatest need.
Many people across the world have little or no control over how their day, week or year will unfold. As we approach the UK winter period (a time when people are inevitably exposed to pressures in the social care and NHS system), we as frontline practitioners must champion a professional and caring approach in the delivery of services. Compassion, respect and dignity remain key to delivering high quality care, especially within the EOLC field. Tools and guides are available to make sure that exceptional quality is delivered every time, but this relies on commitment and time spent learning and absorbing the details on our part.
The best way to support people to have a good death is by listening to their wishes and needs and responding as best you can. At the National Programme Board in August we discussed how to identify people as being in their last year of life and the discussion was enriched by hearing both professional and personal experiences. By empowering the people we are employed to serve and by furthering integration across health and care (including the mainstreaming of personal budgets), we can plan and deliver person-centred and commissioned care more effectively.
I had the opportunity to meet James Sanderson, Director of Personalisation and Choice at NHS England, for a discussion on how Adult Social Care has a lot of experience and insight to offer when it comes to individual budgets and how to empower people to manage and commission their own care. It was a very positive meeting and I left thinking of the many opportunities to support and encourage people to have control over their lives and to provide the resources to meet their needs. Check out James’ latest blog here.
The ADASS EOLC Network met in September and had a really interesting discussion about Bexley’s Home to Assess scheme, which has a particular focus on those who are in hospital at end of life who want to go home to die. Bexley highlighted strong leadership, close relationships and collaborative working across the sector as key ingredients in the scheme’s success. Bexley is doing good work in difficult and complex circumstances so if you are involved in any such developments locally you might want to contact the scheme’s manager, Trude Shaw, who would be happy to share experiences.
I recently attended the Macmillan workshop to provide the Adult Social Care perspective for its London priority planning over the coming year. Macmillan is in the position to consider funding new and innovative schemes which will make a difference to Londoners planning for a positive EOLC experience. The workshop brought together multi-disciplinary professionals to share opinions and experiences, and there was a real willingness by the delegates to look at the good work that is already being done, learn from it and inform options for the future. I am sure that impactful and achievable priorities will follow as a result.
The National Board met again on 17th October and discussed progress made in its first year of operation. Positive work has been achieved and the work streams are beginning to make a difference to the way that practice is being developed. The agenda included a follow-up paper about actions flowing from the last Board Deep Dive discussion on the identification of people who may be in last year of life. There is a pressing need to work with GPs and their practices to improve identification and ownership. On release the paper will be available on the Ambitions website.
One element in the End of Life Care field has been prominent in all discussions over the last year, that of making sufficient resources available to implement new initiatives and ways of working. It does not matter whether this relates to workforce, personal budgets or choices of provision. Without the right level of funding at the right time, in future local authorities, the NHS and the voluntary sector will not be able to provide for a growing population with greater need. Innovation and new ways of working are critical to ensure efficiency but in my view and that of many others I speak with, it simply won’t be enough.
I am forever impressed by the passion, dedication and energy of practitioners, carers, people with experience and those approaching the end of their lives. It is important to say a huge thank you to all of them for their commitment to improving services. Without goodwill services will suffer and people will suffer too.
Please visit the LondonADASS EOLC network page for further resources and information about upcoming meetings and network events.