Older People Living with Cancer

Peer advocates supporting older people affected by cancer


Commissioning for Recovery – Working in partnership across Wessex

Jen Rimmer and Kathleen Gillett from Dorset Macmillan Advocacy recently attended the “Commissioning for Recovery – Working in partnership across Wessex” conference organised by Macmillan Cancer Support.  Members of Dorset Macmillan Advocacy’s Cancer in Older People Development Group (the former Champions Board) Paula Bond and Tracy Street of Macmillan Cancer Support and Abigail Orchard, Lead Cancer Nurse at Dorset County Hospital were there in the role of facilitators and speaker respectively.  Macmillan GP advisors in Dorset, Simon Pennell and Lavina Sakhrani-Clarke attended as did representatives of Dorset Clinical Commissioning Group.

The event brought together commissioners, providers, and service users to discuss and understand how the Recovery Package can make an impact on supporting people living with and beyond cancer and how this fits in with commissioning plans.  From our point of view we tried to understand where advocacy support would fit within the package.

The Recovery Package comprises a number of key interventions developed and tested by the National Cancer Survivorship Inititative (NCSI).  These interventions could make an immediate difference to people affected by cancer, by helping them to prepare for the future and return to a lifestyle as near to normal as possible.

In brief each part of the Recovery Package is designed to work together to inform the overall care pathway:

  • Holistic Needs Assessment (HNA) resulting in a written Care Plan
  • Treatment Summary from the hospital team to inform the GP and the patient
  • Cancer Care Review by the patient’s GP practice
  • Health and Wellbeing education event to enable rehabilitation and self management

See the explanatory video by Macmillan Cancer Support.

The keynote speaker Juliet Bouverie, Director of Services and Influencing at Macmillan Cancer Support described why and how the Recovery Package had come to be developed.  Regarding the HNA Juliet explained that the top concerns for a patient’s care plan may not be those anticipated by clinicians and were most likely to be related to worry, anxiety and fatigue.  I saw immediately the role for peer volunteer advocates enabling their advocacy partners to share feelings and helping to find things out or signpost to sources of practical support when the person with cancer lacks the energy to do so.

Participants’ questions and observations included Kate Jenkins, Clinical Psychologist at Salisbury District Hospital, who felt that patients should be supported to self-manage from the start, that recovery should begin at diagnosis and that it is important not to disempower patients in the first place.  Another participant referred to this process as ‘prehabilitation’.

Recovery package diagram

Recovery package diagram

Simon Pennell chaired a question and answer session with three people affected by cancer.  Paula Bull described her experience of the Bournemouth After Cancer Survivorship Programme (BACSUP) and the enormous difference it made to her physical and mental wellbeing.  She stated that she wanted commissioners to make emotional and practical support part of care and not an ‘add-on’ or a ‘patchy’ service provided solely by charities.

During the afternoon discussions Simon Pennell said that he thought that the Treatment Summary document would empower people affected by cancer to be more proactive in respect of the support they required from their GP.  We agreed that peer volunteer advocates could have a role in assisting their advocacy partners to ‘unpick’ their treatment summary and prepare their questions and ideas ahead of their GP appointment.

Kathleen Gillett, Dorset Macmillan Advocacy

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Dorset advocates visit Macmillan Unit at Christchurch Hospital

Volunteer advocates at Dorset Cancer Advocacy were invited to visit the Macmillan Unit at Christchurch Hospital in July.  A Specialist Palliative Care Unit for patients in South East Dorset and South West Hampshire, it is run by the Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust, and the core services are met by the Hospital Trust.  ‘Macmillan Caring Locally’ is a Trust operating from offices in the  Unit, which provides funding to enhance this care.

Heather Rogers, Senior Clinical Leader at the Macmillan Unit gave the coordinator and a small group of volunteers a comprehensive tour of the facilities, introduced them to the staff team and answered our questions in great detail. The Unit’s garden was particularly beautiful with an aviary and fish pond all adding to the sense of tranquillity.  We were delighted to hear that patients could choose to spend the day out of doors and even sleep out on warm summer nights if they wished.

Wildlife roaming the garden

Wildlife roaming the garden

The specialist palliative care service is made up of an inpatient unit (a ward at the Macmillan Unit) with 16 beds and a dedicated team of inpatient nurses, a team of specialist palliative care community nurses who visit patients at home and in nursing or residential care, a team of doctors, a day centre at the Macmillan Unit which offers some complementary therapies, a team of physiotherapists and occupational therapists, a family support team, and a hospital palliative care team.

Patients are admitted to the Macmillan Unit for treatment of complex or difficult to manage symptoms, or to receive care when they are approaching the end of their life. It is not a long stay unit. Many patients are discharged from the Macmillan Unit ward with ongoing support from the specialist palliative care service, either to their own home, or to nursing or residential care, once their symptoms have been controlled.

Volunteer advocate Patricia Mills with Unit staff in the crafts area

Volunteer advocate Patricia Mills with Unit staff in the crafts area

We discussed with Heather in what ways the Unit differed from a Hospice  and how we might best support our advocacy partners in considering their choices in palliative care.  We left feeling impressed, uplifted and grateful that there is such a service on our doorstep.


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My Road to Volunteering

From a very early age I knew I would be a nurse and I was lucky to enjoy many happy years doing a job that brought me great personal satisfaction whilst helping patients and their families through some difficult and also distressing times. My later years as a cancer services manager were less expected but equally rewarding as I was able to contribute to ensuring we provided safe services and improved patient care and experiences.

 

Anne

Anne

Unfortunately, I developed cancer myself a few years ago. Over a period of just over a year, I needed two major surgical procedures and a course of chemotherapy. This was a difficult time for myself and my family but I was fortunate to have the support of family and friends, as well as excellent support and care from many healthcare professionals. I understood the workings of hospitals and whilst it was very different being on the ‘other side’  it was an environment I felt relatively at home.

 Thankfully my treatment was successful and I returned to full time employment for a couple of years but despite feeling fit and well, I decided to take early retirement with the intention of doing voluntary work which would utilise my skills gained during a long career. I wanted to use my cancer experience to help other people going through a cancer diagnosis and treatment. This combination led me to become involved with Gateshead Cancer Advocacy.

 Being diagnosed with cancer, living with cancer and surviving cancer can be confusing, frightening and sometimes overwhelming but I am enjoying being part of this project, and will soon be supporting people during their cancer journey .  

  

Anne Linnett,

Cancer Support Advocate, Gateshead Cancer Advocacy