Earlier this summer representatives from Rennie Grove Hospice Care in Hertfordshire were invited to attend the UK-China Oncology Congress in Beijing to present their model of end of life care. Andrea Lambert, Head of Children’s Services at the hospice, found that the concept of palliative care is perceived very differently in China.
How did the invitation to the congress come about?
The UK-China Oncology Congress is run by the Department for International Trade and Healthcare UK, part of NHS England, and they were looking for a cross section of representatives to go and share expertise with the Chinese market, but also to create business opportunities. It gave us the opportunity to put something together that was meaningful. We were nervous about going but once we were there we were so proud of what we do in this country, and I think for Jo (Clarke, Head of Training and Education) and I that is what we got out of it, to be able to feel that we spent this whole week completely absorbed and celebrating what we do.
China is amazing, the Chinese people were just fantastic and it has left me wanting to go back, be it workwise or to explore more. We spoke to as many people as we could outside of the congress, we went to the Great Wall, and we spoke to people we were on the bus with and to our guides about what the general public’s awareness of end of life care is, so we got as much out of it as we could.
What did you present and how was it received?
We primarily presented an education package, with the initial view to host Chinese health professionals at Rennie Grove for a month’s education and shadowing programme. What we realised when we got there was that the length of time and the cost were prohibitive to some areas of the health service in China. So we now need to do a lot of work connecting with the people we met and getting something that is more bespoke. At the end of the day we did this to generate income for our charity and to spread the word about our model of hospice care, and we realised that our model of palliative care at home is really far away from what is happening in China at the moment. There is a lot of work we can be doing around promoting end of life care there.
Is there much provision to deliver end of life care in the home of the patient?
The longer we were there talking to people the more complicated the Chinese health system became. We talked to people before we went, a couple of our nurses have been separately a number of years ago on trips to explore palliative care, and I had spoken to an oncology consultant who trained in China and who is now living in England, so we had done a lot of pre-work, and what everybody was saying is that care at home is not an accepted way of caring for people who can afford care. There is a state system but you pay for it, so it is not available to everybody, and people have insurance if they are employed. A huge area of the population are having end of life support at home, but actually on the whole that is no treatment, so if you are receiving treatment that tends to be delivered in a hospital.
Children’s services is my key area. I went to visit the women and children’s hospital in Guangzhou near Hong Kong, and that was absolutely amazing. I went to the oncology ward and I talked to the consultants about palliative care, and they do it as day care, so children will come in for symptom management everyday and be seen as outpatients until they are too poorly to travel and then they will receive palliative care in the hospital. There is just no provision for care to go into the home, and there is also the cultural aspect that people do not talk about death in the way that we are able to. They want treatment as much as possible because that is a sign that they are loving their family and that they are able to afford it. People say, “if it was my parents I would lose faith if I did not take them to hospital to have treatment.”
We need to be able to promote good palliative care and good end of life care before we even think about that being delivered at home, because they do not have the infrastructure or community services to do that at the moment.
How was the concept of palliative care received when you spoke at the congress?
It had mixed responses and it was really interesting for people we spoke to. We thought we would be meeting doctors and nurses, but we also met with venture capitalists because it is the wealthy people and companies who are investing in healthcare. We were being asked how many nurses and doctors would be needed, and that was really hard for us because we are talking about densely populated areas, rural areas, and numbers of people that Jo and I could not comprehend.
One of the areas that we are really open to explore are nursing homes. Because of the recent one child policy there are a lot of elderly people with only one child, so one young adult may have four grandparents they are responsible for. Elderly care is big business, a lot of people were saying they are setting up conglomerates of nursing homes, and to be blunt we thought that is where the money is.
What did you find there that could be applied to care in the UK?
One of the things that really struck me was when I visited the hospital, which was a really amazing experience. It was busy like Piccadilly Circus, and clean, bright and modern. All communication is done by mobile phone, so they can pick up results on their phones, book appointments, and with the children receiving end of life care either they or their families would phone in to speak to the doctors on a daily basis. It was really interesting because just before we went to China the increasing use of telehealth was news. For a community service like ours that is over a large area, what more can we do to increase our contact with patients without having to drive 30 miles to go and see somebody? That is definitely something, that embedding of technology and how we deliver our health services to make them more responsive.
For more information visit Rennie Grove Hospice Care