copied from earlier blog site – originally published December 2015
It is a year on 16th December since Eve died. She inspired me to write this blog. Care is no less fragmented. The research for my doctorate aims to explore this further. I wanted to resubmit this blog to remind everyone that we need to work together patients, families and professionals to improve care.
There are times when our professional and personal lives collide. At university we talk about ‘Insider Researchers’ i.e. people doing research within the sector or organisation they work. I’m sure I am not on my own in expressing how every interaction I have personally with healthcare services is also viewed through a professional lens. This is my story as an ‘Insider Care Coordinator’ as I reflect on my recent experience of coordinating care within my family and within the sector I work. This is my first blog and I know it is long and personal – I hope snappier writing styles will develop!
Eve, my sister in law was diagnosed with advanced bowel cancer on 27th October 2014; she had none of the obvious symptoms. She visited her GP due to tiredness and backache, her blood tests resulted in her GP knocking at her door one evening and sending her straight to hospital.
The hospital based Clinical Nurse Specialist who a few days later discussed the diagnosis with Eve, her son and I, explained that the cancer had spread to the liver, that it was “highly treatable” and that he would get her an appointment with the oncologist for the following week. He said her key worker would be an Advanced Nurse Practitioner “basically a doctor but one that cares”. This was not the time for me to say that I was appalled by his suggestion that doctors don’t care.
I repeated that phrase “highly treatable” as with Eve’s agreement that evening; I informed her five siblings and parents, leaving her son to inform his two brothers.
Eve was discharged home the following day without any dates for any appointments. I spent the next few days waiting. Waiting for the healthcare system to kick into action, for the cancer pathway to commence, for the oncology appointment that we had been reassured would be the following week or for the GP to make contact. By the end of the week, no-one had been in touch with Eve. She was discharged home, where she lives on her own, with devastating news and no follow up.
I became an Insider Care Coordinator, because it appeared like nothing was happening. Yes I can be impatient and I know that systems and appointments take time – but how could I have confidence that things were happening if there was no communication or reassurance for Eve. In service redesign we describe the need to minimise “hand-offs”, i.e. as a patient moves from one part of the system to another. I’m sure there is a long debate to be had about the difference between “hand off” and “handover” – however, for me, as an Insider Care Coordinator this distinction is the difference between fragmentation and coordination.
At St Giles, we have pilot projects involving non-clinical Care Facilitators/Coordinators who are the thread linking pathways together and supporting control, choice and coordination. This is what I felt I needed to do for Eve.
Obviously I had insider knowledge that gave me confidence. I read about the cancer pathway, targets from diagnosis to treatment starting, prognosis statistics and treatment options for people with advanced bowel cancer, which hospitals locally had special interests and whether any element of the care could be done privately and the pitfalls of doing so. Eve gave consent for me to speak to her GP and all decisions about her care were made with Eve and our family.
I came into contact with Julie, a wonderful Medical Secretary, I think we spoke every day that week (week 2) we were able to work out the timescales of various options for Eve’s treatment, she liaised with the hospital teams and I liaised with the GP.
After Eve’s diagnosis, I said to the family, do not be ‘freaked out’ if hospice care is mentioned as a lot of our work is for symptom control and that this support would be really helpful to get in early if needed.
Week three had two significant appointments, the first with the consultant we’d chosen together at a different hospital who based on the same CT scan as the initial diagnosis said that the cancer on the liver was significant and that there was also a shadow on a lung. It was clear at that appointment that Eve’s odds of surviving had reduced significantly. Based on the same CT scan we had gone from “highly treatable” to information that the consultant said would “change her life and those around her for ever”. Involvement of the local palliative care team was mentioned at this appointment, for symptom control and we were able to mobilise this without fear or concern.
In writing this, the day before Eve’s funeral, I am still feeling some anger and frustration towards the original nurse who told us the cancer was “highly treatable” – how could the same CT scan deliver such a different picture. I don’t know whether this was misinformation or lack of confidence in delivering devastating news either way I feel that the information I had been given, which I used to inform the family gave false hope and less time to prepare for what happened next.
The second appointment with the oncologist made a big difference to Eve. At the point of diagnosis Eve had spoken to me about this possibly being the beginning of the end, how she had things she wanted to do in her life and that if she couldn’t do those things because she was too sick, she didn’t want chemotherapy. The oncologist was able to explore this and talked about risks and benefits of treatment and that this would be a joint decision with her. Eve, I think for the first time since diagnosis, felt that she would have some choice and control over decisions. Our consultation locally on “what does good end of life care look like” demonstrated the importance of control and choice for service users and families. I saw the psychological difference this made for Eve.
Throughout weeks 4 and 5, symptoms increased and we had three different prescriptions from three different healthcare professionals within a week. Family conversations were starting to take place about how ill Eve was becoming, pre-assessment was booked for 15th December with chemotherapy scheduled to start on 16th December, 7 weeks after diagnosis.
I could see Eve was deteriorating; I thought we’d get to spring 2016; chemotherapy having started and then we’d face the possibility of the cancer being too aggressive and/or Eve making a decision to stop treatment. We started to prepare ourselves for the possibility of chemotherapy being delayed or cancelled.
Friday of week six, Eve called me to say she needed help getting to her local hospice; her hospice Clinical Nurse Specialist had visited her that morning and suggested she be admitted. Eve was very confused about her tablets and therefore her symptoms were not under control, I took her to the hospice and stayed with her that day. The family felt relieved that she was somewhere safe and that her pain and medication would be sorted out ready for her trip to the hospital Monday and Tuesday.
I took my children to see her on the Sunday, I was shocked at the deterioration so they gave her a Christmas card, some chocolates and a cuddle and left after a few minutes. The children knew that Aunty Eve was ill, they were not scared of visiting a hospice – they had helped run a stall at St Giles’ Christmas Fair a few weeks earlier. Conversations I’d had professionally with our lead for bereavement services meant I was prepared when they asked me if Aunty Eve would get better; I knew the importance of being honest with them and allowing them to ask questions.
I was called at 2.30am Monday with the news that Eve had deteriorated. I telephoned her sons, who were together that night ready for an early start to take their mum to hospital the following day to start treatment. I called the rest of the family and collected my parents in law to take them to see Eve. Nine of us turned up at the hospice in those early hours to support each other.
Eve died at 3.45am on Tuesday 16th December; the day chemotherapy was due to start. Day 2 of week 7.
There are perhaps three key reflections for me professionally.
First, we need to do more to promote the value of hospice care being introduced earlier to both healthcare professionals and the public. We hear numerous accounts of patients who refuse hospice care believing our work is just about dying rather than helping people to live as well as they can for as long as they can by supporting the management of pain and symptoms. People are often referred and access our care too late and often at the point of crisis. My family accepted the involvement of hospice care because they understood it. They felt the value of hospice care and are now actively participating in events and fundraising in Eve’s memory.
Secondly, we need to raise the profile to commissioners and employers of the role hospices have in pre and post bereavement support. That little bit of knowledge I had as an ‘insider’, helped me enormously with my three young children. Hospices do some amazing work with families facing bereavement but there is so much more we could be doing to better equip families, employers, and schools in dealing with loss. My manager was of course very supportive of the flexibility I needed to support Eve at appointments – this is unfortunately not always the case with employers yet we know that our experiences pre-bereavement can impact how we grieve.
The third reflection is one that I am still considering what to do with and that is the role of non-clinical care coordinators. We have introduced these at St Giles for pilot projects we are involved in for Dementia and Frailty with primary care partners and for End of Life Care in partnership with a local housing provider. With the NHS under pressure – can we really expect expensive and often time constrained healthcare professionals to have the time to really understand holistically what a patient is experiencing in order to coordinate and enable access to meet a wide range of needs and can we afford that model of care? Non-clinical support workers can be and are very effective in this role; we have evidence of this, particularly working with primary care and with funding we can continue to train and recruit more people. The evidence we are starting to build demonstrates crisis avoidance and early indications of saving to the wider health economy.
I continue to be committed to exploring and developing this workforce. However I also wonder whether there is a role for family members, in some circumstances to be the Care Coordinator. Right now, I could write the training programme – I know I had a distinct advantage, but I didn’t ‘pull any strings’. It wouldn’t suit all families but I believe that there are people like me who could and would want to fulfil this role. Of course support is needed and a framework of consent and confidentiality, there is a ‘coaching’ role and elements of training. However it also requires healthcare professionals to truly accept these Family Care Coordinators as part of the care team. There are family members researching conditions on the internet trying to ensure their loved one is accessing the best care, can we harness that commitment? If we harness it, can we support the health economy in providing anticipatory care and preventing crisis? Can we then focus Care Coordinators on those who do not have family or friends able to fulfil this role?
As an ‘insider care coordinator’, I was relieved when the hospice became involved as I know how much care coordination hospices do on behalf of their patients and I knew that Eve and the family would be supported. I had confidence in her care and could better balance my role as ‘insider care coordinator’ with being a sister in law, mum, wife and daughter in law.
For many of our pilot projects and innovations, we have to consider whether our intervention would have saved a hospital admission. In Eve’s case, yes I believe so – the rapid deterioration would have resulted, I’m sure in a 999 call and a hospital death.
Eve was an English teacher and inspired many – she leaves a massive hole in my family – it is too early in my bereavement to be concrete about how these reflections will take shape professionally.
Being an insider care coordinator has been a difficult and emotional experience, whilst doing it partly out of necessity and frustration, I do believe there have been benefits to my family and myself in knowing that everything that could be done was done, that there were no delays in her care, that communication across the pathway after that first ‘silent’ week was excellent and in the end she and my family had the very best care that hospices can provide.
hodgesandassociates.co.uk 
Leave a comment