The Cancer in Older People Development Group of Dorset Macmillan Advocacy met for the first time on 12 August at the offices of Dorset Advocacy in Dorchester. Formerly known as the Dorset Local Cancer Champions Board the group had held a workshop to review and refresh its aims following the awarding of 3 year’s regional funding from Macmillan Cancer Support. The workshop resulted in a new name, revised terms of reference and the re-election of the chair, Graham Willetts.
Pictured left to right at the meeting are Kath Money and Janet Lister, volunteer advocates, and Paula Bond, Macmillan Service Development Manager – Dorset & Wiltshire.
Nina’s story is one of the 13 stories told in our recent publication Every Step of the Way. In the video below, Nina’s story is read aloud by Jo from Help and Care, one of our partners delivering advocacy services for older people affected by cancer in Dorset.
Life expectancy in Dorset is good and it’s rising. But it’s only relatively recently that progressive illness has become the main cause of death in England. That brings obvious challenges for those caring for the people affected.
Royal Bournemouth and Christchurch Hospital’s Understanding Health talks for the public focussed on this difficult topic last month. Dr Ros Pugh and Dr Sean Weaver said ‘We believe its vital to talk about End of Life care’.
Dr Ros Pugh is consultant for End of Life care at the Royal Bournemouth and Christchurch Hospitals and is responsible for in-hospital care, the Macmillan Unit and community nursing. Dr Sean Weaver is a gastroenterologist who is also chair of the End of Life Steering Board for Dorset CCG and Associate Medical Director for Care and Governance at the Trust.
L to R Graham Willett, Chair Dorset Local Cancer Champions Board, Ros Pugh, Consultant for End of Life Care at Royal Bournemouth and Christchurch Hospitals, Margaret Wright, volunteer advocate
A short video by Dying Matters demonstated how many people feel its important to talk about End of Life and yet the great majority have not put plans in place – less than 50% of people have made a Will and only 11% have funeral wishes recorded.
‘Expressing and recording your views while you have the capacity to do so is important’ they said. When mental capacity is lost through sudden or progressive illness ‘it is so helpful to doctors and nurses to be able to understand what the person wants in terms of treatment and care’.
We heard about national and local initiatives to promote the benefits of advance planning to the public and to professionals. The Council’s Dorset For You website has a section dedicated to planning ahead.
The ‘take home message’ of the afternoon from the speakers was:
Please think about how you would like to be treated and where you would like to be. Think about your strong views on healthcare and make decisions now while you can. Express your views to someone whom you trust. Record your views and let people know that you have done so.
Health professionals want and need to know about the side effects that people are experiencing as a result of cancer treatment. This was the message that came across strongly from Dr Rachel Hall, Consultant Haematologist, and Lisa Hammond, Stem Cell Transplant Specialist Nurse, when they spoke to the Dorset Myeloma Support Group in September.
Marion Summers, a volunteer advocate with Dorset Cancer Advocacy, is the support group’s organiser and works with the Group Leader Carole Jones. Dorset has double the national incidence of this rare cancer of the bone marrow owing to demographics but still a GP may only see one case in their whole career. For this reason Dorset GPs are visiting the clinic at Royal Bournemouth Hospital each week to increase their understanding of the disease and its diagnosis.
Rachel stressed that ‘one size does not fit all’ and that each individual needs to be carefully assessed when considering treatment options. The assessment takes in to account factors such as their environment, their support network and any other illness or health problems that they face. Rachel said that she favours a multidisciplinary team approach and continuity from the health professionals’ side.
Front L – R Marion Summers, Rachel Hall, James Summers; Back L – R Lisa Hammond, Carole Jones
The management of side effects is crucial in aiming for good quality of life for patients. Lynn Maxwell of the Community Cancer Nursing Service, said that her team advise patients to document their side effects and bring this record with them to appointments. Rachel Hall said it helps to be able to look back over several months and pinpoint possible causes of certain side effects. She described how having a diary on hand avoids the possibility of seeing the doctor after a particularly good week and forgetting to mention that the previous three had been very difficult.
Some patients may feel they can’t or shouldn’t talk or complain about side effects but Lisa Hammond said ‘Be honest… tell us what is really happening to you. Don’t be afraid that we will stop your treatment. A lower dose could reduce or eliminate the side effects.’
Rachel recommended that patients prepare for an appointment by writing down any specific questions about their treatment, then if the answers given aren’t clear asking for more explanation. Taking up the opportunity to talk to the nurse specialist at a separate appointment for more information and to gain a thorough understanding can help too.
Marion said afterwards ‘I think the participants benefited from Rachel Hall’s talk because she was able to explain the aims of treatment in achieving a remission or plateau of multiple myeloma, to preserve a quality of life, extend remission and length of life and to prevent complications and control symptoms. She also explained better use of existing drugs and what new drugs are on the horizon. Participants had the opportunity to question Rachel and Lisa about different treatments, the advisability of having vaccination against Shingles, and the time scale of when new drugs will become available. The feedback from the members after the meeting was very positive.’