Alerted by Linked In, ehospice approached Dr Susie Lapwood for an interview to commemorate her 15 years of dedicated service to Helen and Douglas House. She responded that she had not even realised she had reached this milestone but kindly took the time to respond to a few questions about herself and her work over the past 15 years at the very first children’s hospice.
Would you tell us something about your medical background?
I am proud to be a General Practitioner by background. However, I have had a keen interest in palliative care since my time as a medical student in Oxford in the early 1980s. As it happens, Helen House was opened the same year as I qualified as a doctor (1982). I was privileged to continue in Oxford for my GP training, and was able to choose to include time as a junior doctor at Sir Michael Sobell House, an adult hospice, under Dr Robert Twycross.
What drew you to work in the field of children’s palliative care?
I think it found me! By now with a young family, we had moved back to Oxfordshire in 1996 due to my husband’s job. I was happy working part time as a GP, using my palliative care interest in that role mainly to help care for adults with cancer. Out of the blue I received a letter from the then Medical Director at Helen House, Dr Justin Amery, inviting expressions of interest in a part time role as a doctor there. I didn’t know much about children’s palliative care, but knew of Helen House by reputation as the first children’s hospice in the world. I went along to visit, and was particularly struck by the welcoming atmosphere, providing flexible and responsive child and family-centred care in a homely but professional environment. Within 24 hours I had been interviewed, offered, and gladly accepted the job – and the rest is history. But I realised I would be on a steep learning curve, and although I was only to work there very part time in the beginning, I enrolled on the Cardiff Diploma course in palliative medicine before I even began work. Within a couple of years I had passed the Diploma and subsequently became Deputy Medical Director, supporting the developing medical team in an inspirational partnership with Justin. For the last 7 years I have been the lead doctor, seconded for the last 2 years as Head of Research, Education and Professional Development.
What motivates you to do the sometimes very difficult and emotionally challenging work that you do?
Exploring the role at Helen House seemed a natural next step, bringing together my generalist and specialist palliative care expertise. Speaking more personally, as a Christian, my medical work has always been as a response to a sense of call. As a bottom line, I think all the medical roles I undertake have as their common theme a ‘sharing of the journey’, for the individual with the condition and the family, and for the professionals supporting them. The ‘difficult and challenging’ road is taken as read for a child with a life limiting illness; but there is a real opportunity here, working as a team, to make a positive difference by managing symptoms and supporting decision-making, so that everyone is ‘in step’ with the child or young person, and with the stage of the condition. This ensures that the time that is left is as unhindered as possible by troublesome symptoms.
This also offers me an opportunity to support the team around the child, whether providing direct individual support and advice, or working collaboratively to develop the speciality, and to create resources available to all, such as the APPM Master Formulary, the national curriculum for paediatric palliative medicine, and a care pathway to support extubation.
I also have a real passion to support and enable my fellow health care professionals as they develop their skills and expertise in this challenging field. This is informed by the research into education, training and support needs of children’s hospice doctors that Justin and I undertook around 2002 and presented at the very first Cardiff International Conference for Paediatric Palliative Care.
What are the most significant changes or advances that you have seen at Helen and Douglas House over the past 15 years?
Clinically, at Helen and Douglas House we are privileged now to have a very well developed and resourced specialist medical service, a developing outreach nursing service, and a progressive learning culture. These have supported significant changes in recent years:
- We have become less insular and much more outward-focussed, with increased collaborative working with professionals and teams in both hospital and community.
- We have contributed to new regional policies and documentation for Advance Care Planning, leading we believe to a greatly increased proportion of children being enabled to fulfil wishes to die in a hospice or at home rather than in hospital.
- We have lent support to a much more collaborative approach to difficult decision-making around the child or young person and family.
- Parallel planning’ for each child’s care: preparing for the worst, whilst also making plans for the best or less likely outcomes. Not making assumptions and keeping an open mind, because these children are constantly surprising us and we need to be prepared as best we can.
- Development of the medical team and service including direct employment of 2 consultants and a medical team with a wide range of expertise. This enables us to provide 24/7 specialist input at consultant level. Investment in the team is increasingly enabling doctors to inreach into hospital, outreach into community, and contribute to strategic development of the subspecialty as well as provide direct support for symptom management wherever the child or young person may be.
- We have seen a big increase in acute admissions and transfers from hospital, particularly PICU and NICU, to support symptom management, anticipated end of life care, compassionate extubation, stepped discharge from hospital to community, management of acute illnesses. Emergency admissions now make up a much bigger proportion of our total, but we maintain a commitment to provide regular planned respite stays, too.
- Developing models for transition from children’s to adult hospice services.
- Taking a lead on young adult hospice care and what can be offered uniquely by a young adult hospice.
On the practical side:
- The building and opening of Douglas house, the first young adult hospice for 16-35 year old patients, which is due to celebrate its 10th birthday next year.
- A big increase in size of the organisation, whilst somehow managing to retain a welcoming atmosphere and a focus on individualised patient-and-family centred care. It has grown from 50 to around 300 paid employees over these 15 years, as well as developing a wonderful army of volunteers, another relatively recent initiative.
- Development and expansion of an amazing fundraising department and network of Helen and Douglas House shops, which both raise the profile of the organisation, and raise much-needed funds to support our continuing work.
Any projects you are currently involved in?
I am currently seconded to an exciting role to lead and develop our new hospice department for Research, Education and Professional Development whilst continuing to provide front line clinical care as a member of the medical team. This is a ground-breaking initiative by the hospice, supporting continuing development of an evidence base, training and professional development both within the hospice, and further afield. I am delighted to be supported by the hospice to work with colleagues nationally to develop resources for the subspecialty as it develops (see below).
As part of this role I have also informed the introduction of medical revalidation in the palliative care sector regionally and nationally, championing relevant and formative ‘whole practice’ medical appraisal. I continue to support and advise the APPM (Association for Paediatric Palliative Medicine), hospice organisations and their doctors in preparing for this.
Would you share some of your best memories and insights with us from your time at Helen and Douglas House?
I have so many moving memories I wouldn’t know where to start… Many are ‘fly on the wall’ moments. My office looks out on the lovely Helen House garden and I can often watch children and families enjoying quiet cuddles or play time outside in the sunshine… able to appreciate the sight, smell or feel of plants in the sensory garden, or having fun in the huge accessible tree house that is built all the way round a tree. It’s a small way in which the hospice can add ‘life to days’, not just ‘days to life’.
Sometimes, often at night, there have been particularly challenging times for staff and parents as they seek to support children often with difficult- to- manage pain, abnormal movement, or seizures. Inpatient stays provide a great opportunity not just to provide care, and give families a much-needed break, but to monitor symptoms closely so that we can adjust medication to regain symptom control as the child’s condition fluctuates or progresses. These times remind me of the importance of the whole team around the child, and particularly of our dedicated and experienced nursing staff, providing individualised care day and night.
There have also been some particularly privileged moments when I have happened to be sitting with a child as they have died. At such times I’m reminded again how thin the veil is between life and death and what a privilege it is to share that small part of the journey.
And of course, these children and young adults have taught me so much and continue to do so…
- To always to try and offer something realistic and relevant to hope for, even in the most difficult and sad times. To ‘Prepare for the worst but hope for the best’.
- To keep open to the possibility of change and expect the unexpected. These children and young people constantly surprise me: I’ve been caught out so many times, as the patterns of some of the diseases we see are so variable and unpredictable. Particularly at Douglas House, our young adult hospice, some of our young visitors have long exceeded their anticipated life expectancy. I hope I no longer make assumptions about whether a child or young person is imminently dying. A third of the patients transferred from hospital to Helen and Douglas house for end of life care survive long enough to stabilise and return home, sometimes surviving for months or years.
- To remain teachable, and wanting to keep learning; never to think I know the answers: these brave young people constantly surprise me and constantly teach me new things.
- To live in the present and welcome the gifts of each day. In the company of young people whose life is likely to be shortened, I am challenged to make the very best of each opportunity and to try not to grumble too much! And I try not to take my or my children’s life and health for granted.
When I consider the enormity of the needs of children, and young adults worldwide with life limiting illnesses, and the tiny contribution I’m able to make, I am reminded of the starfish story, significant in the founding of Douglas House … As Sister Frances Dominica would say … ‘It’s worth doing if it makes a difference to just this one…’
Dr Susie Lapwood is Head of Research, Education and Professional Development, and Senior Specialty Doctor, at Helen and Douglas House Hospices for Children and Young Adults. She is an Honorary Clinical Fellow at the Oxford University Hospitals NHS Trust, an Executive committee member for the Association for Paediatric Palliative Medicine and a GP Appraiser for Oxfordshire. She began working at Helen House in 1998.
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