“The magic of Rainbows hospice is that we listen”
Dr Satbir Singh Jassal talks about his work as medical director at Rainbows Hospice for Children and Young People.
Sixty per cent of the end-of-life referrals I receive I send home. That’s 60% more parents who get to spend another day with their child; 60% of life-limited children who get to see more, do more, enjoy more.
They do come back to us for end-of-life care again, and will inevitably pass away, but sometimes the key thing I do is make them comfortable, giving them and their families precious time to enjoy being together.
I started working with Rainbows in 1993, before the hospice opened. I was there through the initial stages of getting the hospice going and through the ups and downs of any new unit. I’ve watched Rainbows go from a small unit to what it is today.
I am one of the longest-serving hospice doctors in the UK. I am a full-time senior partner of a market-town general practice, as well as a Home Office approved signatory for Loughborough crematorium, an honorary contact at Loros, have honorary lecturer status at Cardiff Medical School and am the chair of a number of national groups, including the Association of Paediatric Palliative Medicine and the education and training board. I’m pretty busy.
We don’t create revolution at Rainbows, we create evolution. We do it properly, and we do it well. It’s about life at Rainbows, not death.
Here are Rainbows, we’re a team of four doctors supporting skilled paediatric nurses and health care assistants.
Our nurses and health care assistants are incredibly experienced and very good at what they do.
We doctors are market-town GPs and we don’t try to be anything other than that.
Our skills are in palliative care, not paediatric care.
It is amongst our nurses, however, that the specialisms lie. We have nurses that specialise in tracheotomy and respiratory care, amongst other things.
There isn’t one thing that makes us a leader in the field, however.
But why do people come from abroad to see what we do? We’ve had people from all over the world pop their head in our door, and it is simply because of the team here.
It’s the nurse-led team that we have working here 24 hours a day, seven days a week, 365 days a year.
Our staff retention rate at Rainbows is high and as a result so is the depth of experience. We’re pioneers in the field, not leaders.
When Rainbows opened, I didn’t have a team. It was just me. I was on call one evening and I began thinking about what it would be like to have a team and so i began writing “how to” notes for my “dream team”.
Eventually I got my team and those notes became the Symptom Control Manual, which is now in its eighth edition. It is available on the internet, on the websites of Rainbows, the Canadian Society of Palliative Care and Together for Short Lives. It has gone from a few pages to a book of 160 pages.
It is in Canada, Australia, it is translated into Turkish and is used in India. It is even produced in Balinese. It is extremely well-used across the world. I’m extremely proud of it.
The latest edition includes pieces written by nurses at Rainbows and professionals from Alder Hey Children’s Hospital – it is basically a who’s who of palliative care in the UK.
The work I do at Rainbows is split into three groups. There are those who come in for respite care, give themselves and their families a break.
Then there are the children who have finished their treatment and come in for end-of-life care. We get a steady stream of children and young people coming into Rainbows for end-of-life care – it’s usually those for whom we have been caring for a long time. That is always very intense.
And there are those children who come to us for palliative care. Usually they have symptoms, though for whatever reason their GP or consultant is struggling to control them. By definition, the child comes to me when all other avenues and routes have been taken and they’ve been found to be ineffective.
I am the last resort.
The magic at Rainbows is not clever. In fact it’s easy.
We listen. We listen to parents; we hear the details of the child’s problems and history. We listen to the child. We talk.
I had one child come to me in uncontrollable pain. No one could work out what was wrong. After communicating with him through computer equipment, we found the problem – indigestion. Because of this, he wasn’t eating. Once we had treated this young man with simple medication we sent him off to have music therapy. What this did was give him spiritual relief; what he was effectively doing before this was looking at his own death, and he was frightened. The therapy helped him to address this, and he did so well.
The key thing is listening. I could teach anyone to manage symptoms in a day; what I could not do is teach palliative care in that time.
The skills here at Rainbows aren’t individual – they’re in the team and in the hospice itself.
A perfect example of how palliative care makes all the difference is with one young person we treated for a number of years who was a huge fan of Lord of the Rings.
When his condition reached a terminal stage and it became apparent that this young man would be coming to us for end-of-life care, we really wanted him to be able to see the third instalment of the films, which was yet to be shown in the UK. We all tried everything in our power to get this movie for him to watch before he passed away, but unfortunately we just couldn’t get the film. Even the producers couldn’t get it.
However, they were so moved by this young man’s story that they sent back a box full of everything Lord of the Rings; merchandise, toys, videos, CD, clothes and even a personalised message from Sir Ian McKellen, who plays Gandalf.
The pleasure this brought to the boy was indescribable and he passed away in his mother’s arms a happy child.
There was no magic here – we worked as a team. And that’s the way palliative care is done. Thankfully, that mother’s memory is of a peaceful and calm child.
I’ve also helped to write the Oxford Handbook of Palliative Medicine, which is used by every doctor in the UK and is now the master document for palliative medicine.
We’re already working on the second edition of the handbook.
What I and others at the APPM are trying to do is improve the use of palliative medicines – we want to include what the right medicines are, what the right doses are and the right ways to use them, which, in time, will mean that doctors can treat those in need immediately.
Rainbows is constantly developing and we can never say we are a centre of excellence but it’s a concept for something we’ll always strive for – always improving; always doing more.
Is there work to do? Lots. It is about having the time and resources and doing it well. I’m a man that has learned to be patient – do it properly, and do it well.
For further information on Rainbows, please visit www.rainbows.co.uk or call 01509 638 000.