Older People Living with Cancer

Peer advocates supporting older people affected by cancer


Leave a comment

Fantastic news! Our numbers are increasing again…

Age UK Northumberland (AUKN) is delighted to announce that they will be joining the Cancer, Older People and Advocacy  programme after successfully securing funding from Macmillan Cancer Support to deliver a dedicated advocacy service for older people affected by cancer throughout Northumberland for three years.

aukn

Her Grace the Duchess of Northumberland is Patron of OPAAL and said “I am absolutely delighted that the Cancer, Older People and Advocacy programme is coming to Northumberland. Older people affected by cancer can have such a rotten time so giving other older people with their own experience of cancer the opportunity to come forward to be trained as advocates to support them in their local community is wonderful.”

The Duchess of Northumberland. Photograph by Margaret Whittaker

The Duchess of Northumberland. Photograph by Margaret Whittaker

AUKN is an established health and social care based charity across the county of Northumberland and its services include befriending, advocacy, practical support, information advice and guidance, welfare benefits (case work including representation at tribunal) and housing & social care options casework/advice/assessments, health & wellbeing exercise programmes for older people. AUKN has been a trusted source of advocacy in Northumberland for the last 7 years offering general advocacy and specialist advocacy support to older people encountering financial abuse, scams and housing & social care options. Advocacy is a vital service supporting older people who find it difficult to voice their wishes and those who are denied or are unable to access treatment, services, benefits and support.

mac

Data from Northumberland’s Health and Wellbeing Board Cancer Profile (Northern and Yorkshire Cancer Registry and Information Service (NYCRIS)) reveals that almost 1900 people in Northumberland are diagnosed with cancer each year and over 900 die of the disease, accounting for 28% of all deaths. Northumberland is ranked as the 29th most deprived local authority in England and there is a link to social deprivation and significantly worse outcomes for survival and life expectancy. This is perhaps linked to lack of awareness of cancer signs and symptoms within poorer communities and restricted access to health services which may be magnified in areas of rurality such as Northumberland.

This project will fill a gap in specialist Advocacy services across Northumberland, addressing inequalities that vulnerable older people (aged 50+) affected by cancer face both with cancer treatment options and in access to healthcare and support services. The advocate will support the older person throughout their cancer journey, helping them to obtain all of the information and support that they need.

Deb McGarrity of AgeUK Northumberland in front of the Round House, AUKN's headquarters

Deb McGarrity of AgeUK Northumberland in front of the Round House, AUKN’s headquarters

AUKN is currently recruiting volunteers for this exciting new service and will hope to be rolling out the service soon. Please visit AUKN’s website for further information and updates: www.ageuk.org.uk/northumberland

 

Deborah McGarrity, Advocate Coordinator, Age UK Northumberland.


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


2 Comments

Support is needed during the ‘void’

We are collecting advocacy stories as part of the national project and hope to hear from both volunteer advocates and advocacy partners about the difference our work has made to them.  I visited one of our advocacy partners to chat about what would be involved in sharing his story and to preview the questions that I would be asking him at our next meeting.   After the questions which asked for some detail on his own particular situation and how he had experienced the advocacy support came a question about the ‘wider impact’ that he considered his involvement with our project to have had.

I said it was not important if he felt at this time that there had not been any wider impact.  He responded that he was very keen to contribute to the work that we are doing and he knew already what impact he would like to have.  He would like people affected by cancer to have support already from the time of investigations and tests throughout the process of diagnosis.

Having been referred by his GP and seen a specialist he had gone alone to hospital to have some tests.  The health professional had displayed the result on a screen, pointed out in a very matter of fact way a large tumour, and said he would be making a referral back to the specialist.  The ensuing weeks of waiting for the next appointment were for that patient ‘a void’.  He felt strongly that people should not have to face that void which, for him, was a time of great worry despite having family support.  Sources of support should have been suggested ahead of time and the uncertainty which defined that period, which he finds it difficult to look back on, could have been alleviated by advocacy support.

As a result of this advocacy partner’s cancer journey his life has completely changed.  When the story is told there will be more lessons to be learned but until then we will share his experience of the ‘void’ and seek ways to raise awareness of the benefits of advocacy support at the very start of the journey.

Kathleen Gillett, Dorset Cancer Advocacy


Leave a comment

Invest in ‘well-thought-out local initiatives’ says GP

Our work in developing peer advocacy support for older people at any stage of their cancer journey has come about as a result of research by Macmillan Cancer Support into health inequalities.  Reducing health inequalities would benefit everyone.

Many GPs, including Dr David Supple in Brighton, are all too aware that ‘the UK remains blighted by a persisting health gap.’

Dr Supple wrote to The Guardian newspaper last week on the topic of opening hours for general practice surgeries. He also laments the ‘decimation of local voluntary sector support agencies.’  ‘Surely’, he asked,  ‘the large amount of funding required to increase opening hours nationally should be diverted to well-thought-out local initiatives to reduce the health divide?’

Harnessing the skills and experience of older volunteers to support their peers through the cancer journey, ensuring patients can exercise voice, choice and control and get the most from the treatment and care available to them qualifies as such an initiative in my opinion.

The support our volunteer advocates give ensures that older people need not have a more difficult experience of cancer.  People who are uncomfortable with written information can discuss their options face to face in their own time at home,  those without the confidence to voice their opinion can develop the confidence or ask their advocate to speak for them,  those unsure of their benefit entitlements will be signposted to expert help, those who are anxious will get emotional support,  those without transport will get help to find the easiest option for them, those with caring responsibilities will be able to find out about carer support.

When thinking about tackling health inequalities we sometimes focus firstly on public health initiatives and lifestyle campaigns but the work we are doing also contributes to raising life expectancy and increasing the number of years lived in  good health and with quality of life.

Kathleen Gillett, Dorset Cancer Advocacy