Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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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

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Amplifying older people’s cancer voices into clinical commissioning groups

The final film in the series we have been sharing all this week sets out a rationale for clinical commissioning groups (CCG’s) to engage with local cancer, older people and advocacy projects. The aim of this engagement is two-fold.  Firstly, we are keen to support the voices of older people affected by cancer into local commissioning practice to support service pathway developments.  Supported by OPAAL and the Cancer, Older People and Advocacy programme partner projects older people affected by cancer are actively engaged in starting conversations with commissioners, getting involved in local service design and developing better services for their peers through our local cancer champion boards and our Train the Trainer project.   Secondly we are using this film to help us to make the case for long term commissioning of peer advocacy services for older people affected by cancer by CCGs.

This film features older people affected by cancer talking about the effectiveness of peer advocacy support, alongside health and care professionals and commissioners who are building strong relationships with their local cancer, older people and advocacy projects:

Our Older People’s Cancer Voices project is about taking these messages out into local communities to start, and to support, conversations between older people affected by cancer and local commissioning groups, we look forward to making contact with you soon.

Ang Broadbridge, OPAAL


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Encouraging health professionals to refer to us

The film we are highlighting today from our Older People’s Cancer Voices project has a call to action for health and care professionals – your local Cancer, Older People and Advocacy project needs you to refer older people affected by cancer.

We wanted to use this film to highlight both the strong outcomes of independent advocacy support for older people affected by cancer, but also the benefits to health and care professionals, both in terms of cost effectiveness and saving time, but also in strengthening service provision and therefore improving experiences for older people affected by cancer.

Our programme steering groups, cancer champions and the health professionals that we have strong working relationships with tell us that trust is a key issue for professionals making referrals outside the boundaries of their own services. Having trust in that referral, knowing the organisation you are referring to is a high quality service and will deliver strong patient centred outcomes, these are understandable barriers to referring into an independent advocacy service if you haven’t experienced these services before. We hope this film brings to life for health professionals what they, and their patient or the carer they are supporting can expect from a professionally led volunteer peer advocacy service, supported by experiences of the health and care professionals who already do make referrals:

We hope this film leaves you wanting to start a conversation with your local Cancer, Older People and Advocacy partner project, see the About Us page for details, we’re back tomorrow with a film aimed at commissioners.

Ang Broadbridge, OPAAL


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Cancer, Older People and Advocacy on film

The first of our Cancer, Older People and Advocacy films provides a strong introduction to the Cancer, Older People and Advocacy programme. It’s a short film intended to give a flavour of the programme, demonstrating the difference independent advocacy makes for older people affected by cancer.

This film also brings a focus to the support we offer to older people affected by cancer who don’t have cancer themselves. It features Mike Pochin from Dorset Advocacy talking about the emotional pressures that carers feel, the role peer advocates can play in being a listening ear for carers and helping give clarity about the help they feel they need and the additional services that they might access to get that support.

This film features older people affected by cancer, and volunteer peer advocates talking about the need for independent advocacy, the benefits having the support of an advocate can bring for any older person affected by cancer and encourages you to find out more about our programme:

We’ll be back tomorrow with a film aimed at encouraging new volunteer peer advocates to join us.

Ang Broadbridge, OPAAL


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In conversation with Malcolm

I recently had the privilege of speaking with Malcolm Orgee, a 54 year old in full time employment with a young family. Malcolm is one of the people affected by cancer that our independent advocacy service supports.

After suffering frequent and disabling headaches for six years Malcolm was finally diagnosed with CLL, Chronic Lymphocytic Leukaemia in January 2013. Malcolm remembers the day of his diagnosis vividly, describing to me the weather, cold clear snowy day, the drive to hospital and conversation with his consultant. He was told he had probably had CLL for six years and given a prognosis of a further seven years.

Malcolm described the news as being an ‘absolute bombshell’. His immediate thoughts turned to his family, his partner and two young children. How was he to tell them?

Thankfully they proved to be very supportive, however living with this condition meant he did not want this to dominate family life, he recognised he needed support from outside his family.

Many people are affected in this way, they have a strong urge to protect family members from the worst of their fears and concerns and often need to share these with someone outside the family.

After many tests and visits to Dorset County Hospital he asked his nurse if there was any support available for him. He was told no not really, he didn’t feel the nurse was very effective. Eventually he called Macmillan Cancer Support who gave him the number of the Cancer Older People Advocacy service at Help & Care Bournemouth.

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Six months after his diagnosis Malcolm was introduced to Bob Smith. Bob was to become Malcolm’s advocate. The advocacy service go to great pains to match people needing support with Advocates who themselves have had similar cancer experiences. Bob had previously had Mantle Cell Lymphoma and was able to understand Malcolm’s condition from the word go.

Malcolm was struggling with the bewildering array of information relating to his condition and trying to cope with the emotional effects of his diagnosis whilst grappling with the need to inform his employer of his new situation.

Malcolm works as a Head Gardener on a private estate in Dorset, he loves his work and wants to maintain his position. He is thankful he has supportive colleagues and employers. Nonetheless he has concerns as to what the future might bring for himself and his family.

LMalcolm was placed on a ‘watch and wait’ programme, meaning no immediate treatment was offered. This proved difficult for some members of his family to understand, particularly his elderly mother who constantly asks Malcolm when he is going to be offered treatment.
Malcolm finds it difficult to have to repeatedly explain the ‘watch and wait programme’ to his 81 year old Mum.

For two and a half years Malcolm has lived with quarterly hospital visits, monitoring his condition. For two of these years he has been supported by Bob, an Independent Peer Advocate. Bob has been there for Malcolm whenever he has needed him.

Asked to describe his advocacy support to me Malcolm said “I have been massively supported by Bob, he understands my cancer as his own cancer has many parallels. Bob knows what I am going through and has been there for me every step of the way. He understands all the emotional ups and downs, the complexity of my cancer, the day to day practicalities I live with, the whole scenario”.

He also told me he is constantly amazed by Bob’s dedication, always being there for me, particularly as Bob is a volunteer advocate

Malcolm feels this service is absolutely essential and should be available for all those who need it. He wishes he’d met Bob before he was diagnosed for then he would have had all the support he needed from the outset.

Malcolm recommends this highly personal and confidential service to all, he knows he would not have managed so well without Bob’s support.

I am deeply grateful to Bob Smith and all our wonderfully dedicated volunteers. They freely give not only their time, but bring valuable personal experience of their own to share with and inform their relationship with all those they support.

Bob like his many colleagues has spent a lot of time in training, and being supported by professional paid advocates. He has also contributed to the volunteer team’s experience helping to make our Dorset Advocacy Service one in which we can be very proud.

I’d like to offer my personal thanks to Malcolm for sharing his story, he understands our need to capture his and other’s such stories in our attempts to convince others of the value of our work to those who desperately need advocacy support.

Kath Parson, OPAAL Chief Executive


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Impetus joins the Cancer, Older People and Advocacy programme

Brighton and Hove Impetus are delighted to be establishing a new cancer advocacy service in the city, thanks to funding from Macmillan Cancer Support.

Impetus is a health and social care charity that enables vulnerable and disadvantaged people in Brighton and Hove to improve their wellbeing and quality of life. We achieve this via a number of front-line services that provide befriending, specialist advocacy, mentoring, training, social networking, peer support, volunteering and work placements for a wide range of vulnerable people.

impetus logo (50mm)

Impetus has been providing independent advocacy to our client groups over a number of years. At the moment, this work includes providing advocacy to parents with learning disabilities and adults with learning disabilities who are victims of crime. Impetus also runs the local Independent Complaints Advocacy Service (ICAS), providing advocacy support to people who want to make a complaint about the treatment they have received from the NHS.

Our experience of delivering these services, and in working with a number of groups of people with different needs, shows us how important independent advocacy is to enabling individuals to have their voice heard, access appropriate support and feel less isolated by their condition or experience. We are very pleased to now have an opportunity to provide this type of support to people affected by cancer, working alongside colleagues in existing services within the city.

Around 1150 people in Brighton and Hove are diagnosed with cancer each year. The death rate amongst the under 75’s in the city is higher than the national death rate – at a national level, this rate has been steadily decreasing, but this is not the case in Brighton and Hove, where the decline has been very small.

The Impetus Macmillan Cancer Advocacy Service will provide advocacy to older people, adults with learning disabilities, mental health problems and those with autistic spectrum conditions affected by a diagnosis of cancer. We are currently recruiting the new staff team and will be launching the service soon. Watch this space for further updates!

We hope to have a Cancer, Older People and Advocacy programme specific webpage on our website soon but in the meantime you can get our contact details via our main website at www.bh-impetus.org

Natalie Brook, Deputy Chief Officer, Brighton and Hove Impetus


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Engaging with the Dorset Clinical Commissioning Group

Graham Willetts, chair of Dorset Macmillan Advocacy’s Cancer in Older People Development Group has participated, along with other group members, volunteer advocates and staff, in recent consultations by Dorset Clinical Commissioning Group (CCG) about Cancer and End of Life services.

Two Public, Patient and Carer consultation events asked ‘What is good about current services and what could be better?’ and the Stakeholder (service providers from NHS and other sectors) consultation event asked participants to consider the collected responses to this question and to discuss in groups five areas including:

  • What does it mean to plan and tailor cancer care around patients and carers?
  • Do we need to focus more on survivorship? What do we need to do to support increasing number of patients living with cancer for 5 years or more?

The Cancer and End of Life Services clinical commissioning programme (CCP) is one of six set up by the Dorset CCG. The CCP is reviewing the priorities set in 2013 and looking to future trends and challenges, including the Better Together programme for integrated locality health and social care teams. The Dorset CCG will also launch a Clinical Services Review in the autumn.

Within the groups and during the closing plenary we described the benefits of independent advocacy to cancer patients and their carers and distributed copies of the case studies publication Every Step of the Way. Tracy Street, Regional Macmillan Involvement Coordinator, described the benefits of support groups.  Tracy and Paula Bond, Regional Macmillan Development Manager, were invited to facilitate two of the discussion groups.

In summing up Dr Lionel Cartwright, a local GP and clinical chair of the Cancer and End of Life CCP, said he was encouraged by the discussions. He also said that he would like people to be empowered in terms of deciding the type of care that they want.

 

Sarah Turner and Graham Willetts at CCG Stakeholder event 3  September

 Pictured Sarah Turner, Principal Programme Lead, Dorset CCG and Graham Willetts

Kathleen Gillett, Dorset Macmillan Advocacy