Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Mike was terrified of meeting with his doctors, Bob helped build his confidence and gave a voice to his fears

Today’s blog post comes from Ang Broadbridge, OPAAL’s Deputy CEO talking about our latest Older People’s Cancer Voices film.

The COPA programme is complemented by our Department of Health funded Older People’s Cancer Voices project; it’s about amplifying the voices of older people affected by cancer, bringing advocacy to life through the stories of older people who have accessed it, and those volunteers involved in its provision.  I’ve been leading this project for 18 months and we’ve tried to give older people access to a wide range of tools to support them to share their experiences.  I’m really excited about the films we are working on with older people.  Bringing their stories to life and seeing advocacy partnerships on screen draws a focus to the many benefits of advocacy, highlights the impact of cancer for older people and shows the strength of those partnerships.

We work with vulnerable client groups and this has been our first foray into filming one to one with advocates and their advocacy partners.  We wanted to be brave about telling these stories and not shy away from difficult topics, working alongside older people to bring these issues to light sensitively.

Mike’s Story, recently released on our YouTube channel highlights some of the many issues advocates support older people affected by cancer with.  Mike talks about the impact of his cancer diagnosis, how his life was taken over by the thought of cancer and how things changed for him when he was introduced to Bob, his volunteer peer advocate.

Mike was in recovery from alcoholism and had just had a diagnosis of diabetes when he was diagnosed with cancer.  He describes feeling terrified and disillusioned, sometimes suicidal.  Bob was someone he could talk to, someone who really knew cancer, Mike says he feels it is essential “to talk to someone who has had similar experiences”.  Bob helped Mike to feel more confident going for treatment and check-ups, to make decisions and speak to health professionals, something Mike found “terrifying” in the early days of his diagnosis.

Bob helped Mike with a wide range of issues; helping to organise his paperwork including identifying pensions, speaking to HMRC and helping him to complete his tax form, encouraging him in his progress overcoming alcoholism, encouraging him to take steps to pick up the telephone and return to the local project who were supporting him with his recovery after he lapsed following his cancer diagnosis, reassuring him about side effects of treatment, ensuring health professionals were made aware that he could feel claustrophobic in smaller spaces, and at first representing his wishes and needs, later encouraging him to have the confidence to do these things for himself next time.

Bob reflects on how the objective of the partnership, to help Mike to stand on his own two feet and express his wishes, has been achieved and he feels he has learned a lot from Mike too, and the many other advocacy partners he has supported in his role.

You can find out more about Older People’s Cancer Voices by following the hashtag #mycanceradvocacystory on twitter, and by following OPAAL’s YouTube channel.

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Patient experience can improve the lung cancer pathway

Today Kathleen Gillett of Dorset Macmillan Advocacy tells us about an online survey on what matters most for people affected by lung cancer and their carers:

People can use their experiences of health and social care, good or bad, to help make things better for others in the future. In health this is called ‘patient experience’ and the patient point of view is often sought through ‘patient engagement’ methods such as events or surveys.  Patient groups and voluntary organisations sometimes call this ‘user involvement’.  I’m still getting to grips with these concepts and it helps my understanding to try to explain them in plain English.

A national survey of cancer patients takes place every year called the National Cancer Patient Experience Survey and the latest survey should be published in the next couple of months.  It contains useful data right down to individual local hospital Trust level.

There is currently a survey open specifically for lung cancer patients and carers (as well as a version for Health Professionals).  The survey is being carried out by the UK Lung Cancer Coalition (UKLCC) which is a coalition of the UK’s leading lung cancer experts, senior NHS professionals, charities and healthcare companies.

Established in November 2005 to help to bring lung cancer out of the political, clinical and media shadow the organisation’s long-term vision is to double one year lung cancer survival by 2015 and five year survival by 2020. The ambition is underpinned by four key objectives including; to empower patients to take an active part in their care.

The report of the previous UKLCC survey which took place in 2013 Putting patients first: Understanding what matters most to lung cancer patients and carers will serve as a baseline to compare with the results of the new survey as many of the questions are similar.  The Foreword to that report said the survey had ‘highlighted the need to promote and embed a more patient-centred approach to lung cancer care.

At Dorset Macmillan Advocacy we are looking at how we might better support people affected by lung cancer.  We are talking to colleagues in the Health service about providing advocacy support to patients with suspected lung cancer to enable them to access the many important tests that they need as quickly as possible.  These tests may take place at different locations and there might be several in the space of a week.

We were recently able to provide an advocate at quite short notice to accompany a person to a scan. The time spent waiting for the scan was usefully spent uncovering concerns and preparing questions so that at the consultation which followed the person was able to be proactive.  We received very good feedback about the effectiveness of the volunteer’s support at this appointment from the patient, the consultant and the patient’s GP.

As an advocacy service we can amplify the voices of the people we have supported to date who are affected by lung cancer by asking if they would like our help to take part in the new survey (it is available online and can be downloaded as a paper document).  We can also ask local Clinical Nurse Specialists for Lung cancer if they are completing the survey and let them know that if they have patients (or carers) who would like to take part in the survey but need help to do so then we may be able to offer support.

The survey is available via the pink coloured bar on the right of the UKLCC home page and the closing date is 27 June 2016.

Kathleen Gillett, Dorset Macmillan Advocacy

 

 


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Understanding and motivation from another angle

Kathleen Gillett from programme partner Dorset Macmillan Advocacy writes in the second of two posts about how our peer advocates can support older people affected by cancer achieve voice, choice and control in their cancer journey:

Whilst getting to grips with the notions of ‘health literacy’ and ‘patient activation’ that I read about in a report by Macmillan Cancer Support I went on to think about how health literacy and patient activation might interact and found it easiest to use a graph.

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So, person A has a high level of health literacy but a weak level of patient activation.  They know and understand a lot but lack motivation to move forward.  Person B has very strong patient activation but is hampered in decision making by lack of knowledge and poor understanding.  Person C has a balance represented by their position on the dotted line.  Their level of health literacy and patient activation are sufficient to allow them to move forward without one impeding the other.

What can independent advocacy support potentially do for persons A, B and C?  Provide emotional support to build confidence and source practical help to reduce barriers thus enabling person A to strengthen their patient activation (and move closer to the dotted line). Source information in an appropriate format and create opportunities for discussion to check understanding with person B thus increasing their health literacy.  Help person C to maintain their balance and grow in both knowledge and confidence throughout their journey (travelling up the dotted line).

There’s no right place to be on this graph, just as there’s no single right way to handle a cancer diagnosis.  In reality persons A, B and C will have their own views on what help they need and the role of advocacy is to empower them to express those views.  They can be supported to move in a particular direction only if they have expressed the wish to do so.

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What of people with both low health literacy and weak patient activation? Older people may be more likely to be in this situation with the risk of low general literacy from limited educational opportunities, having to contend with multiple long term conditions that sap time and energy and having only patchy social support networks.  Tailored empathetic peer advocacy support that comes to them at home and stays with them for as long as needed can nevertheless help them to achieve voice, choice and control on their cancer journey.

Kathleen Gillett, Dorset Macmillan Advocacy


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Guinea pigs in London!?

In today’s post Karen Pigott, from programme partner Dorset Advocacy and Dorset Macmillan Advocacy, tells us about some recent training delivered after a range of delivery partners identified a need for support on complex case work:

On the 16th and 17th February 15 brave souls from a variety of projects across the country attended Complex Case Training in London. The training was commissioned by OPAAL for the Cancer, Older People and Advocacy programme and designed by Jenny Purcell from Dorset Advocacy and delivered by her and myself.

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This was the first time the training was delivered so a big ‘thanks‘ to the participants for their suggestions and patience as we tweaked some timings and content to accommodate everyone’s needs.

There was a good mixture of volunteer peer advocates and paid staff with a range of experience which really added to the dynamics and depth of the two days. The importance of being able to share ongoing complex and challenging issues in a supportive environment with a problem solving approach cannot be underestimated.

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At the end of the course all but one participant scored themselves as having increased confidence in approaching complex case work.

Every participant received a ‘Tool kit for Complex Case Training’ to enable them to cascade it through their own organisation.

It was an intense two days but hopefully everyone is confidently applying everything they learnt and shared in whatever situation they find themselves in!

Karen Pigott, Macmillan Project Coordinator, Dorset Advocacy

 


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What a coincidence!

Our colleagues and programme partners Staffs & Wolves Cancer Advocacy project have just published the post below on their own blog and Kath Curley project manager has kindly agreed to share it with us:

At last week’s Cancer Older People and Advocacy Programme Project Management Group Meeting Kathleen Gillett, from Dorset Macmillan Advocacy,  gave a presentation on Macmillan’s Recovery Package.

Recovery Package DiagramThe Recovery Package is a series of key interventions which, when delivered together, can greatly improve outcomes for people living with and beyond cancer.

The Recovery Package is made up of the following elements:

  • Holistic Needs Assessment (HNA) and care planning.
  • Treatment Summary completed at the end of each acute treatment phase 
  • Cancer Care Review completed by the GP or practice nurse to discuss the person’s needs.
  • An education and support event such as Health and Well-being Clinics.

Today, Collette Cooper and I met with Sarah Gorton, Macmillan Cancer Survivorship Project Manager, based at Royal Stoke Hospital, who has taken up a 2 year Macmillan funded project. Sarah is working with the CNSs, across Royal Stoke and County Hospitals, for 4 cancer sites:

  1. Head and Neck
  2. Brain
  3. Primary Bone
  4. Gynaecological  

to implement an electronic Holistic Needs Assessment (eHNA) within these clinics as an integral part of the Recovery Package.

We discussed with Sarah where advocacy fits within the Package and that Advocates compliment and support the work the CNSs are doing. We hope this will lead to greater partnership and collaborative working with the health professionals.

Good luck Sarah!

Kath Curley, Staffs and Wolves Cancer Advocacy and Support Project Manager.


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there must surely be a place for advocacy…

In this post Helen Vernon, advocate at Sefton Pensioners Advocacy Centre (SPAC), talks about collaboration, compassion, choice and advocacy:

In February I attended an excellent conference called Palliative End of Life Care: Collaboration, Compassion, Choice.  The event was attended by a wide range of interested parties including commissioners, consultants, GP’s, nurses and members of the voluntary sector.

One interesting thing that almost every speaker opted to do was to relate their speech to their own personal experience of losing a family member.  This had been the motivation for each of them to follow their career path, either because the experience had been so poor or because they wanted to replicate a positive experience for others.

There were several key pieces of information that came out of the day and I have attempted to summarise some of these below.

The keynote speaker was Jacquie White who is the Deputy Director for Long Term Conditions in NHS England with responsibility for improving the quality of life and experience of end of life care for people with Long Term Conditions and their carers.   As part of her presentation she showed this slide about the six ambitions she would like health and care professionals to sign up to to achieve improvements in care.  There are obvious links between these ambitions and advocacy.

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Jacquie also spoke about their plans to develop an “orientation” process for people who have been diagnosed with a long term condition and she described it as a ‘how to’ for living with that condition.  If this became the norm there must surely be a place for advocacy within this programme.

Alison Colclough from St Luke’s Hospice in Chester spoke about their homelessness project and whether people who are street homeless get choice at the end of their life.  This also resonated strongly with our advocacy work and it made me consider whether we have explored this sufficiently when we are promoting our service. 

The theme of collaboration ran strongly throughout the day and there was a lot of advice about how this could be achieved. There were stories of success and advice about approaches to improving inter agency working.  Annamarie Challinor, Head of Service Development (Macmillan) for The End of Life Project shared this image with us, which we could use as a visual reminder of how broadly we are promoting the COPA project.

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Helen Vernon, Advocate, Sefton Pensioners Advocacy Centre (SPAC)

 

 

 


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Care Act advocacy referrals ‘way below’ expected level

Advocacy experts fear people are being left without support to challenge council decisions about their care. Too few people are getting independent advocacy they are legally entitled to under the Care Act 2014, experts warn.

Four months after a local authority’s failure to arrange an advocate for a woman led to the first successful legal challenge under the Care Act, council reports reveal a dearth of referrals for independent advocacy. One local authority averaged less than two a month. A second saw just 9% of predicted demand.

Advocacy trainers and providers fear vulnerable adults are being left without support to challenge council decisions about their care.

Councils say they are investigating low referral numbers and working to raise awareness of advocacy support.

The advocacy duty

Under the Care Act, councils are legally required to offer an advocate to anyone who has ‘substantial difficulty’ being involved in assessments, care planning, reviews and safeguarding cases and lacks a suitable friend or relative to represent them.

The advocacy rights came into force in April. The government says more than 32,000 people should benefit this year. But the latest set of Care Act updates filed by councils, and feedback from providers, suggest many are missing out.

Referrals ‘way below’ expectations

A report published this month shows Reading council planned to spend £130,000 for more than 4,000 hours of Care Act advocacy this year. Six months in, just £5,000 has been spent on 170 hours of support. Only 26 people have accessed the service – less than 3% of all assessed for care and support needs.

“Demand is well below what we would expect,” the report says.

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The council is running events to raise awareness of the new advocacy entitlement and said “ongoing monitoring” of referral rates was needed.

A report for Nottinghamshire council shows just six people were referred for independent advocacy in the first three months after the act came into force. The council is investigating whether people are being referred appropriately.

One advocate working in the south of England, who asked not to be named, told Community Care his service received fewer than 10 referrals despite expecting hundreds.

Kate Mercer, a leading advocacy trainer, said she knew providers with similarly low referral numbers: “It’s patchy but overall there’s real concern in the sector that councils are either deliberately not promoting advocacy at a time of cutbacks or, a less cynical view, that they simply don’t have the resources to train staff to know when to refer.

The risk is people won’t know what they’re entitled to, councils will do the bare minimum and – with no advocate involved – no-one pushes anything forward.”

Commissioning issues

Advocacy providers warn short-term commissioning is contributing to the problem.

Almost two-thirds (63%) of Care Act advocacy contracts are for less than a year, according to evidence submitted by the Care and Support Alliance to a Public Accounts Committee inquiry last month. One in four deals is a ‘spot purchase’ contract, where councils only pay a fee per referral.

Advocacy is meant to receive £45m funding through the Better Care Fund, a pooled budget between councils and NHS providers. However, a survey of advocacy providers included in the evidence to MPs suggests services expect to receive less than half of the promised funding.

Phillippa Ashcroft, head of policy at VoiceAbility, said the situation made it harder for providers to plan and build awareness of services.

She said: “If you look at the type of commissioning, particularly spot purchasing, it points to more of a gatekeeping mentality. It makes it difficult for providers to train staff and really build momentum locally.

“When Independent Mental Capacity Advocacy was brought in a few years ago, there was significant funding in the start-up phase and there was a network of mental capacity leads championing it. It had a whole raft of support. Care Act advocacy doesn’t have anything like that.”

Ashcroft said some councils had implemented the advocacy duty well, but described the national picture as “poor overall”. Part of the problem is delays in people getting social care assessments, she added.

“This is what we hear from people ringing into our helpline. The advocacy duty actually applies from the point of first contact, request or referral, including self-referral, for an assessment. Advocates support people to prepare for their assessment and without access to advocacy, for both assessments and for information and advice, people have found that they are being sent round the houses instead.”

The Advocacy Action Alliance’s recent monitoring report found: 63% of contracts for independent advocacy were for 12 months or less. Some local authorities that had not commissioned any Care Act advocacy in time for April 2015 required “nudging” by advocacy providers to set up a commissioning process.
In the majority of reported cases (17 local authorities out of 21) the spend on independent advocacy was less than 60% of what the Local Government Association’s Care Act ‘Ready Reckoner’ had indicated it should be for 2015-16, and the average was less than 50%.
15 out of 29 responses reported that their contracts and contracts held by other organisations to provide advocacy had been reduced or ended since April 2015, suggesting a reduction in the provision of advocacy in many local authority areas.

Kath Parson, Chief Executive, OPAAL