At a recent conference in Hungary, Sue Boucher, International children’s edition editor, was privileged to meet Dr Sat Jassel MBE, the man behind the well known ‘Rainbows Children’s Hospice Guidelines’ amongst other key documents. He very kindly agreed to be interviewed and to tell ehospice a little more about himself and his work.
Can you give us a little insight into Sat Jassal, the man?
I have been married to my wife Sunita for over 25 years and we have two children, Sarina and Kiran, both of whom are at university. I trained at Nottingham University and have worked as a general practitioner in Loughborough for 25 years. My main passion and hobby is travel and walking. I have travelled extensively around the world but still have a large bucket list to work through. My wife and I have walked many trails around the UK but we are always attracted back to walking in the Scottish Highlands.
What drew you to work in the field of children’s palliative care?
I trained as a general practitioner and settled in Loughborough. After a few years I was looking for new challenges but there did not appear to be anything that had caught my imagination. Then my wife came home from a talk about a children’s hospice opening within Loughborough itself and she encouraged me to find out more. When I went to talk to the organisers about their plans, they offered me the job of medical director.
The hospice movement in the UK was in its infancy then and there was no way of learning about the subspecialty of paediatric palliative medicine from anyone. The challenge was to start from nothing and develop knowledge and learning to help a whole group of seriously ill and vulnerable children who had essentially being ignored. The exciting part of the work was that we were pioneers and whenever anyone had an idea to try something new we discovered that not only we were with the first people to think of these ideas but that by working together we could bring about changes in the care and attitude towards the children we care for.
What motivates you to continue?
After 21 years of working in children’s palliative medicine I have not lost any of that initial motivation and continue to become excited at new changes and developments occurring within the field of paediatric palliative medicine. I sometimes feel like a child in a sweet shop discovering new things, ranging from using new types of drugs to seeing the benefits of therapies, such as music therapy.
What are the highlights of your work experience at Rainbows Children’s Hospice?
There have been various highlights of working as a hospice doctor. I originally wrote a symptom control manual for the new doctors within our children’s hospice and have now seen this grow and develop with specialists writing chapters for the manual. It has been wonderful to see that it is being used throughout the UK but now also the world being translated into various languages. A number of us doctors had a vision of a master drug formulary where we could get the most up-to-date and reliable information on dosages to give in paediatric palliative medicine. We have now produced this formulary which is going through its third edition and I have thoroughly enjoyed working with all the doctors around the country to produce this piece of work. It is very exciting to now see that the paediatricians around the world also wish to contribute towards the formulary.
It has been exciting to see Rainbows Children’s Hospice develop over the last 20 years through its problems and mistakes to become a stable and effective children’s hospice providing a high standard of care. A few years ago we extended the hospice and developed a young adult unit with an additional therapy wing. This has allowed us to extend our range of care and provided a beautiful environment for the children that we look after.
Have there been difficult challenges for you to overcome?
There have been a number of difficult challenges which we have tried to overcome or are in the process of overcoming. Without doubt the first challenge was around the paediatricians themselves and their failure to recognise the importance and value of good paediatric palliative care for their children. We have not completely overcome this and continue to battle to keep paediatric palliative care on the agenda within our local major teaching hospitals.
The second challenge has been around funding and raising money to keep the hospice going. This is a universal problem and until the NHS recognises the need for paediatric palliative medicine and funds it fully as it does other specialities this will continue to be an issue.
Another challenge that I continue to struggle with is to get paediatric palliative care consultants into our region. Although these doctors are now going through training we are still unable to get funding for the work within our region. This problem is currently number one on my priority list to overcome.
What lies ahead for you and for Rainbows Children’s Hospice?
The future at rainbows children’s hospice is continual development. The challenges are really around maintaining the personnel who work and have developed skills at the hospice. We need to nurture our staff and allow them opportunities to expand, as all the great ideas come from the team as a whole.
What did it mean to you to be awarded an MBE?
The MBE (Member of the British Empire) award was a great honour. It meant a lot to me in a great many ways. It was a recognition of how Rainbows Children’s Hospice has developed over the last 20 years and the value of the work that is done by all members of the team. It was also an acknowledgement by the Queen of the development of the children’s palliative care movement around the UK and all the hard work done by all the doctors and nurses who have tried to make a difference for terminally ill children. Finally it was wonderful to be able to take my wife and children to Buckingham Palace to, in some small way, thank them for all the times that we cancelled family outings or dad wasn’t available because he was with an ill child at the hospice.
Dr Sat Jassal’s Guidelines on symptom control in paediatric palliative care can be downloaded as a free resource from the Together for Short Lives website
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