Designing services around the needs of patients is a key principle of our draft vision for London’s Community Services.
Our conference in July opened with a short story from Brian Andrews who cared for his wife during her battle with cancer. His story provides a powerful inspiration for all community service professionals and reiterates the importance of working together to create a fully integrated health and social care system.
In June of 2009 my wife, myself and my daughter all had surgery in the same hospital within three weeks of each other; we had not planned that type of holiday. I had open heart surgery, a replacement aortic valve and a couple of bypasses. My daughter had 80% of her bowel removed with all the consequences that followed and my wife had a lumpectomy and the start of treatment for grade 3 breast cancer.
I recovered very quickly from my surgery, my daughter less so and my wife was to then embark on a very torrid journey through chemotherapy and radiology and ongoing treatment. I cared for her during that period but I did not see myself as a carer. I learnt how to flush her picc line and redress it; I helped her self-inject because she had blood clots as a consequence of the chemotherapy but I still didn’t see myself as a carer.
In June 2010, we have rolled over 13 months now, both my wife and I were given the all clear. My cardiologist did not want to see me for another year, Gillian was told that her breast cancer hadn’t returned and again they did not want to see her for another year. We had cause for celebration and we did that the following month by taking our grandsons on holiday, which was just as well because within two months my wife was dead.
In the September, 2 months after the all clear, I had Gill admitted via A&E back into hospital suffering from temperature spikes and sickness. They ran some tests over the weekend and on the Monday morning two doctors came into her room, who we’d never seen before, and told us they’d got some very bad news. Gill had acute myeloid leukemia, it was too advanced for realistic treatment and in effect they couldn’t help her. She asked how long, they said eight weeks – in reality she died 26 days later.
When you have been with someone for 52 years 26 days is not enough time. When we were first given that news that morning I was like a rabbit in the headlights, in complete denial, in the back of my mind I remember reading or hearing things about leukemia, improvements and recovery and I thought that was going to be the case. But my wife was far more practical, far more pragmatic, realistic and brave and she realised that what they were saying was going to happen.
Gillian wanted to die at home and the family wanted that as well and the hospital agreed. Unfortunately it then took ten days to escape from the hospital, and I use the word escape based around the fact that there had been an application for funding and that was taking time. That was weird because I hadn’t asked for funding, I didn’t need funding, I didn’t want funding – someone had applied on my behalf without any form of dialogue. So I told them I didn’t want funding I wanted to get her home as quickly as possible and we were told that if we were going to change the rules at that stage of the game, because we were in the system, it was probably going to delay things so we went along with it.
During those final days in the hospital her hospital care deteriorated significantly. It was quite disgraceful but that’s another story.
Gill’s arrival home was a turning point the contrast between the NHS and home palliative care was huge, the district nurses, the hospice nurses, our local GP surgery, OT all worked together to support us at home. I continued to care – I was a loving husband wanting to do the best for his wife but I was overwhelmed, absolutely overwhelmed. After five days I sacked the domestic care. The head carer seemed to be more interested in her time sheets than anything else. On the fifth day a new carer came in and I told her my wife’s situation and she told us that Gillian wasn’t going to die, we were all going to pray together and sweet Jesus was going to save her; I am a man of faith but that was not the hope and help I was looking for at that time.
Five days before Gill died we had a visit from the head of nursing at St Christopher’s hospice and I overheard a conversation out in the hall between her and my daughter, with her telling my daughter that she needed to talk to me, and my wife overheard that conversation as well and insisted that we have that conversation together. We were told that because of Gill’s condition and her blood chemistry there was a chance that she could die from a massive haemorrhage at any time, either internally or externally. I was back in the headlights again, especially when I asked what I should do if that occurred when I was on my own and I was told to cuddle her, tell her I love her and that it would only take a couple of minutes. We were also cautioned to have some dark towelling, dark coloured towelling around to mitigate the visual dimensions of someone dyeing from a massive haemorrhage. My wife calmly told me where those towels were kept because I hadn’t got a clue. In the event it didn’t happen. On reflection I am glad we were given that advice because if you think the implications of having not been told, if she did die from a massive haemorrhage would have been truly traumatic to even envisage. So I am glad we had that information.
Gillian crumbled visibly during her last few days this disease was eating her up from the inside, her organs were failing and it was very distressful. On the final evening, Friday evening, an angel arrived in the form of a Marie Curie nurse and she took control in such an amazing way. She was to look after the two of us until my wife died, in my arms, at six thirty the following morning, and then she continued to look after me until my family arrived. It was such a profound experience that I very shortly afterwards volunteered to work with Marie Curie and have been doing so ever since. I have various roles within Marie Curie and indeed outside within other end of life initiatives but it is all focused on patients and carers, patients and families.
I hear and you hear, I know, of people wishing for continuity, ideally the same nurse all the time; ideally the same team but at the very least seamless continuity between all the people involved in that end of life process is so important. I had that, we had that, with one notable exception. Six days before Gill died she was in significant pain in the early hours of a Sunday morning, she wasn’t yet on a morphine syringe pump and previous medication had worn off; Oramorph wasn’t touching it and we needed help. Sadly there was no one available, no district nurses, no hospice nurses, no one from the surgery there was absolutely no one to help us and the person I was talking to realised that, realised our predicament, and in the end suggested we go via the emergency doctor route, Emdoc, and that was my only alternative so that is what I agreed to. The doctor who arrived a couple of hours later, to be honest his English wasn’t perfect, but more importantly he hadn’t got a clue about my wife’s situation, he knew nothing about her whatsoever and as such he didn’t want to give her an injection, he wanted to call an ambulance and have her admitted back to hospital. My wife was in a lot of pain, she had been sent home to die, we had do not resuscitate notices all around the apartment and this man wanted to send her back into hospital. She got her injection but only after I physically prevented that doctor from leaving my apartment. I behaved badly but I was in a very bad state. It was very distressful for all of us, it was distressful for my wife, it was distressful for me and it was distressful for that poor doctor who found himself in that situation. It also soured my experience of home palliative care which had by and large been good and suddenly it was wrecked because of that one incident, one painful incident.
I am told there are 6.4 million carers in the UK of whom some 500,000 are involved in end of life care. I was one of those and I didn’t know it. If you’d asked me what I needed, what we needed at the start of that journey I couldn’t have told you. Nothing prepares you for caring for someone you love at the end of their life. So the problem is we don’t know what we don’t know and that is your challenge as a professional. I am sure there are a lot of good intentions in this room today. Sadly you are not going to get it 100% right but if you listen to your customers, which I know you do, if you listen to your ex-customers, which is also happening a lot now, then there is a chance we are going to make it better for people who are yet to start and embark on such a traumatic journey.
Since 2010, Brian has been volunteering for Marie Curie Cancer Care. at a number of levels. He is also a member of the pan London End of Life executive and chair of their “Lay Board”. He also serves as a co-chair of a working group within the NHS End of Life Clinical Leadership Group.