On the night before Christmas there was a knock at my door. I opened it and was met by a smiling woman with an array of presents. She apologised for troubling me on Christmas Eve and asked whether I knew where my elderly neighbour was, as it was unusual for him to be out at this time of the evening. I invited her in and broke the news to her that her friend of 40 years had died six months ago.
Understandably she was shocked and extremely upset. I asked whether she knew why she had not been notified. She explained that she was divorced from my neighbour’s cousins but still kept in touch at Christmas despite the family split. We exchanged best wishes for Christmas and the New Year and I promised I would let his family know that she had come to visit. Following discussion with the family, I discovered there was no comprehensive list of contacts for his sons to follow. Even though they did their best to inform immediate family and friends, they hadn’t known there was still this link with a separated member of the family.
Sometimes this scenario is inevitable as even the best laid plans have gaps. However, if my neighbour had talked more openly with his family about this link, his boys would have been able to inform everyone who was dear to him so they could be included in the grieving process.
In relation to EOLC meetings and events, there were a number that I attended towards the end of 2017. Some key highlights include:
The ADASS EOLC Network met and discussed the Care Closer to Home initiative. In line with other work streams (e.g. mental health) the group began to formulate a ‘Top Tips’ for professionals to follow when developing or implementing practice around EOLC services. The debate was passionate and follow-up work looks set to make a real difference. A draft document will be produced in early 2018.
When the National Professional EOLC Network met we were informed of proposed move of the EOLC Programme from the Medical Directorate to the Commissioning and Strategy Directorate within NHSE. This will enable much closer links with the Personalisation developments led by James Sanderson, which I reported on in the last blog. Professor Bee Wee will remain National Clinical Director. I realise that for some this may seem a strange change, however from my point of view it makes perfect sense and aligns the excellent work done within Adult Social Services with the expanding work of Personal Health Budgets. I also see this as a further endorsement of the value of Social Care in this field.
The main discussion of the Ambitions Partnership Steering group centred on work done by Jonathon Ellis and his task and finish group around the future sustainability and development of the Partnerships website. Given the costs involved in working up a business case and long term funding proposals, Partners will be asked about providing some financial support to get through the next six months or so. Funding to this point has been provided by NHSE. Please send me your views on the website and any comments you have about its functionality etc. so that I can feed this into the future work programme.
I have written previously about the Innovation Unit’s Better Endings project to develop models of care and support for people at the end of life or carers following the death of a loved one. A great amount has been achieved and I was excited to join a workshop before Christmas and hear about the tools which have been developed. One of these was Ripples, a very simple but effective tool to use with people who have yet to tell their story to anyone or leave a legacy for others in the future. Be sure to check out the Ripples blog that has been put together for others to share the way of working that has been developed out of the work.
Personal note to end
On Christmas Day I awoke to discover the most unexpected present - Pneumonia. I was supported to receive my treatment at home rather than go into hospital and for that I am extremely grateful to my GP.
As part of my recovery I was referred for a chest X-ray at my local hospital, but owing to a missing GP signature on the referral form I ended up on a back-and-forth journey to get my GP’s ‘squiggle’, all the while still feeling unwell and vulnerable. The experience reminded me of the importance of a person-centred approach, which would have elevated my wishes above a mere ‘squiggle’ on the page. Bureaucracy and procedure took precedence over my wishes as a patient, and an otherwise effective service was let down. If I had not been helped by my wife, a support which many people cannot rely on, I imagine my experience would have been even more difficult.
I longingly await for all health and social care staff to ask the person what they think at the onset. I also want professionals to feel confident in taking calculated risks i.e. I could have consented to the X-ray without the need to also have a GP signature on the referral form that I was given. I hope that 2018 will be the year where we always fully engage the individual from the onset and use our collective common sense to enhance the health and care experience for all citizens.