Interview with Professor Stephen Spiro

Stephen Spiro is a professor of respiratory medicine. He became a consultant in 1977, with a joint appointment between the Royal Brompton and University College Hospitals. Stephen left the Brompton in 1994 to become clinical director of medicine and later medical director at UCL from 2000-2. He retired in 2009.

Retirement is extremely busy! Two days after I retired, a friend asked if I would consider becoming chairman of Rennie Grove Hospice Care which I knew very little about at the time It is a charity providing specialist care and support for adults and children with a life-limiting illness in Buckinghamshire and west Hertfordshire. Their mission is to look after all those who wish to die at home and provide them with the best quality of care during the last year of their life. I had a couple of interviews and found it inspiring and interesting. After ten years, I’m now due to finish my post.

I had also been a trustee and vice chair of the British Lung Foundation for 14 years and retired in 2016. I also still teach medical students and am treasurer of the Friends of our local park.
There was a steep learning curve. It’s an unusual hospice as it doesn’t have an in-patient unit. We have no beds but three administration centres, a warehouse, 28 shops, a day centre and around 60 nurses who work in the community. Ideally, we like to look after people in the last year of their life but often we are referred to people very late.

We have 5 day teams covering a large area, a children’s team for those up to 19 years old and a night team which makes a real difference. So much can go wrong at night. If you ring 111 you’ll get an ambulance which will inevitably take you to hospital but people want to die at home – not in A&E.

We work with district nurses, GPs, palliative care consultants and carers in the community – it works extremely well and the support is invaluable. About two thirds of us say we want to die at home but in the UK, only 20 per cent of us achieve this. We have the worst record in Europe for people dying in acute hospital wards (52%).

We are proud that 92 per cent of the 2000 individual and families we look after achieve their wish for a loved one to die at home. We are well supported because families we look after often want to give something back with in memoriam gifts and also become volunteers with us.
The statutory funding from Clinical Commissioning Groups is not based on anything but history. Some hospices get 30 per cent of their costs, some get none and we get about ten per cent. We’ve doubled our overall income in the last decade to over £10m through the activities of our fundraising directorate as well as doubling the numbers of patients that we look after each year. In fact, we have to raise £23,000 a day to stand still – it’s a staggering figure.
The hospice movement is relatively new – mainly following the initiative of Cicely Saunders and end of life care developed as a specialty. People never used to talk about death – even now it’s hard.

Many hospices tend to work very independently, but we are very collaborative and work together with lots of organisations. We also have an education facility that is extremely efficient.

However, ultimately it seems wrong and illogical that end-of-life care has to be funded by the voluntary sector and this is potentially unsustainable as the demands from an increasing elderly population is growing fast. We succeed because of the intensity of local support, but perhaps the new NHS structure which is aimed more at community care, may make statuary fuinding more accessible.
I’m embarrassed to say I didn’t really. Hospitals and hospital doctors are remarkably isolated. I would do my ward rounds and see people in my clinic. Lung cancer being what it is, a lot of people deteriorated and when they did they wouldn’t come to clinic we’d ask a clinical nurse specialist to follow up to learn that the individual had died.

It was only when I went into the community that I realised how difficult dying is and its impact. Half of us will die without a partner – one of us has to go first – some people have difficult family set ups or far-flung families Once you start going into people’s houses, you realise how hard it is for them and talking to families is not always so straight forward. This is an area of medicine that requires great skill, compassion and patience.

I’ve learnt from Rennie Grove how hard the nurses work. They also have to be careful, be tactful and be aware of safeguarding issues. There is often a great deal of anxiety and the need for calm support when someone is dying. The carer or partner might not be coping and there can be conflict over pain management for example. It is far more challenging than I had realised and the hospice teams handle it all so well.
End-of-life care in general is coming under much more pressure because the babyboomers are now going through society. The number of people dying in the UK is going to go up in the next ten years. People with long-term illnesses such as cancer are living longer and many illnesses are more complex. Everyone wants to maintain their quality of life for as long as possible and offering holistic and supportive care, either at home or in a Day Centre becomes a central feature.

The shortage of staff coming into this profession is the next challenge and innovative ways to looking after our families will be important. Everyone wants a good death and with good palliative care they should be able to achieve that.

www.renniegrove.org