I recently spent time with the Information Manager for Macmillan Cancer Support based in Aintree Hospital, which has been based there for about four years. There were a number of useful points that arose from our discussion and I hope it will result in an increase in referrals from this source.
The Information Manager and the Information Officer have both worked within the hospital in other roles for many years. As a result they know a large number of the professionals and have made fantastic inroads with regard to promoting their service. This is particularly true in the case of the Cancer Nurse Specialists (CNS). It therefore occurred to me that our time would be best spent promoting our service to other professionals in the hospital. Clearly the CNS were referring regularly to the Macmillan Centre who will in turn refer cases to the Cancer, Older People and Advocacy project as and when appropriate.
We discussed one of the cases that they were involved in and we reflected upon how they intended to proceed. They acknowledged that there was a role for advocacy in this case and although on this occasion they had completed the work, we could have provided an outreach element that they were unable to. The gentleman in question was aged 52 so I was able to reiterate that we are able to work with people aged over 50.
Helen Vernon
During the visit I was given information about a number of projects that I was not aware of, for example a clothing bank run by Macmillan that provides ten items of clothing for people who had experienced weight loss or gain. This is such a useful resource and I am sure I will be referring to them in the future.
The Information Centre in the north of our borough sits outside of the hospital and so potentially the referral stream from CNS to Macmillan is different. Therefore we will continue to speak with the CNS in this area.
Malcolm joined Dorset Macmillan Advocacy as a Peer Advocate early in 2015. With personal experience of cancer and of training people in a commercial environment, we were pleased to welcome him to the team.
When it came to looking for candidates to put forward for the OPAAL/Sanofi Train the Trainer project, Malcolm was a natural choice.
Here Malcolm relates his training and also his first experience of putting it into action when he attended a Macmillan Bitesize event at Dorchester County Hospital in November 2015.
“Initially as volunteers we were invited to a training session both to develop our skills in delivery and also to share our experiences of bereavement and cancer at first hand; both what you yourself had experienced and also the effects cancer had had on service users you had encountered whether on their health/wellbeing, employment, relationships and a new attitude to life in general.
Cancer had figured as a central issue to a particular client that I had been supporting; coming to terms with the treatments and after-effects and how relatives, friends and work colleagues viewed the client pre and post treatment.
The training aimed to prepare volunteers for speaking to health care professionals about both personal and client experiences of cancer and recovery.
The first event I attended as a Trainer was held on the 16th November 2015 at Dorset County Hospital in Dorchester.
The objective was to provide a group of health care staff with first-hand experience of the viewpoints of volunteers supporting advocacy partners.
I shared a story about an advocacy partner who was recovering from cancer and wanted to return to work. We spoke about how I worked with her to understand her requirements and what she would ideally prefer to do, as her work was a physical post. Together we produced a strategy that she was able to present to her employers.
The talk appeared to be well received by the audience, possibly providing them with food for thought.
Feedback gleaned from the event included positive comments about how useful it was to hear from previous patients and also to have heard the advocacy stories direct from the Peer Advocates themselves demonstrating how powerful it is to hear evidence from the people not only who have personal experience of cancer but who have come forward to support others using their own experience and skills.”
In this blog post Pamela Hill, OPAAL‘s newest National Development Officer, tells us about cascading information to our Primary Care colleagues:
I recently spent two days representing OPAAL at the Macmillan Primary Care conference offering information to primary and secondary care delegates through our exhibition stand. What an excellent networking opportunity the event provided. While I wasn’t able to hear any of the speakers, I chatted with a number of Macmillan health care professionals. They were all extremely positive about the event which was intended to explore how those involved in primary and secondary care can work in a more integrated way to provide the best possible outcomes for those people affected by cancer.
Pamela alongside Karen Pierce from delivery partner SPAC
Delegates were very interested in the exhibition stands and many came forward to find out more about the Cancer, Older People and Advocacy programme. It was a good opportunity to convince health care professionals who practice in areas where the project doesn’t already operate that we need them to influence their respective CCG’s by explaining the importance and benefits of advocacy support for older people affected by cancer. Of course, this suggestion was met with the usual response that the CCG’s have no money left in their budgets.
The really good news is that the GP’s from the 14 areas where the service already operates were very positive about their experiences of Cancer, Older People and Advocacy programme. I even managed to persuade one or two GP’s who have experience of the benefits of advocacy support to bring their colleagues along to our stand so they too could learn about more about the Cancer, Older People and Advocacy programme.
During the conference sessions, while the delegates were listening to speakers, I decided to introduce myself to the other exhibitors and they were all keen to explain their work to me. They listened to the information I had to offer about the Cancer, Older People and Advocacy programme and we swapped contact details and information leaflets so that we are better able to signpost and refer. I intend to share the information and leaflets with partners.
Pamela Hill OPAAL and Karen Pierce SPAC
Working across boundaries? Yes, I was heartened to feel it really is happening but we must continue to further develop the partnership approach so that we not only offer an holistic approach to services for those older people affected by cancer but wouldn’t it be a real step forward if we could offer the same services in every area of the UK?
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.
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.
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.
Jo Lee, senior advocate at Cancer, Older People and Advocacy programme delivery partner Dorset Macmillan Advocacy tells us in this blog about a framework for supporting older people affected by cancer:
“Person Centred” and “Personalisation” are terms that have become common in recent years; they describe a working method whereby support and services are tailored to individual need rather than the “one size fits all” approach predominant for so many years within social care provision.
Dorset Macmillan Advocacy incorporated a training session on Person Centred Planning Tools during their most recent volunteer’s networking day.
These “tools” are practical ways in which we can incorporate “person centred thinking” into our work. Using two fictional case studies, the volunteer advocates practised using a “relationship circle”, a “communication chart”, “4 + 1 Questions” and “working/not working”
Training is underway
Senior Macmillan Advocate, Jo Lee, had taken copies from a website called “Think About Your Life” which has used person centred planning tools and adapted them to the cancer patient’s perspective.
4 + 1 questions
Feedback from the volunteer advocates was positive; it was noted how using the tools can help not only in enhancing listening skills but providing a means to record and analyse information, using it as a framework for support. This can then be used to help the advocacy partner, for instance with their decision making or enable them to look at a problem from a different perspective.
The planning tools are available from www.thinkaboutyourlife.org. This website was developed and funded by the HSA Foundation, which is a charity and part of the international work of Helen Sanderson Associates.
“The use of health and social care by people with cancer” a 2014 study commissioned by The Department of Health, shows a clear link between cancer diagnosis and use of social care. The report explains “For some social care is critical to their independence and ability to participate in society.” However, use of social care by people with cancer is not equivalent to use of social care by people with other chronic conditions. A report by Macmillan in 2010 ‘Cancer should be as much a social concern as it is a health priority’, found that statutory social care was not meeting the needs of people with cancer. ‘People were often not referred for an assessment and did not know about the types of services which may be available. The research also found that those who commissioned social care services had limited understanding of the specific needs of people affected by cancer.
However, recent updates to legislation aim to transform the delivery of health and social care. The Care Act now places a duty on local authorities to work more closely with health services in order to promote the wellbeing of adults and improve the quality of care they receive. The Care Act espouses core values of ‘wellbeing’ alongside ‘whole person’ care, promoting independence. It extends the right for eligible people to access independent advocacy so that they can be involved in social care assessment and safeguarding processes. But what about advocacy support for people to be involved in integrated health and social care processes? What will ‘whole person’ care look like for people affected by cancer? My understanding is that it must be based on the needs of the individual and their particular circumstances.
Cancer advocacy services, born of a collaboration between Macmillan Cancer Support and The Older People’s Advocacy Alliance, are responsive to people affected by cancer and their individual circumstances. The trained advocates, professional advocates and peer advocates with their own experiences of cancer, have time to build a relationship of trust with the client, listening and finding out what’s important to that individual (‘the whole person’).
When I started my role as Service Manager at The Macmillan Impetus Cancer Advocacy Service in Brighton & Hove, I had some concerns that health and social care professionals might view advocates warily. However, my experience so far, is that health and social care professionals welcome the opportunity to have the involvement of an advocate to support their clients.
Sam Bond
I found a recent conversation with a health professional quite revealing on this matter. He told me that the hospital where he worked had had an experience where some paid carers accompanying clients to appointments sometimes behaved in an adversarial and accusing manner towards health professionals. He said he had found that particular carers sometimes had their own agendas when they accompanied patients to appointments. This caused the health workers felt defensive and sadly the patient’s wishes were getting lost in the middle of all of this.
Having worked as a paid carer myself for a number of years, it is not my view that paid carers generally act in an accusing way. However, this example does emphasise the value of properly trained advocates. An advocate’s only concern is to represent the wishes of the person instructing them. Advocacy is certainly NOT about accompanying a client to an appointment equipped with a detective’s notebook and a suspicious frown! Of course advocates can and must raise concerns regarding the quality of care if clients wish them to. But this is just a fraction of what advocates do.
An advocate can extend the support that health and social care professionals are able to offer. For example, Cancer Advocates can provide support by helping people to prepare questions for appointments in order that the person can make the best use of time with a clinician, as well as attending alongside the person. Advocates can ensure the person understands, gathering information and explaining information that might not be clear or requesting clarification. They can write information down for the person, and/or talk through the information again later on. Advocates do not give advice but help ensure clients can access information and consider its implications in relation to their particular circumstances, so that they are able to make informed choices. The benefit of Advocacy is that the advocate is instructed by the person. This puts the person in control at a time when they may feel that they don’t have much control over the cancer, the treatment, the side effects, or their life.
Clients often say they are concerned about who will be their point of contact. There may be a number of different health and social care workers involved, which can be confusing for people. For a person affected by cancer an advocate can be a consistent person alongside them helping to access services, and navigate the health and social care system. An advocate can be an asset in assisting good communication between client and health and social care providers and between the professionals and client. An advocate can ensure the person’s views are represented, helping the client to get the most out of health and social care and promoting the client’s independence. Cancer advocates are great examples of the way in which advocacy support complements the work of both health and social care professionals.
Sam Bond
Phone: 01273 737888, Email: Cancer Advocacy@bh-impetus.org
New information collated by the National End of Life Care Intelligence Network
Published: 26 June 2015
PHE’s National End of Life Care Intelligence Network (NEoLCIN) works with partner organisations to collect, analyse and present end of life care intelligence from a wide variety of sources. This report summarises the key findings of the network and its partners over the last year. Although much of the research has been published previously, this is the first time it has been brought together in one place.
New findings show there is a growing understanding within the health sector of what is important to people at the end of life.
Key findings from the report include:
The proportion of people dying at home or in care homes continues to increase
Patients with an Electronic Palliative Care Co-ordination System (EPaCCS) record and those receiving palliative care services such as hospice at home, Gold Standards Framework or Macmillan services are more likely to die in the place of their preference
Two in five people with dementia die in hospital, indicating that the trend towards increasing hospital deaths for people living with dementia has reversed.
Factors most importance to people at the end of their life were; having pain and other symptoms managed effectively, being surrounded by loved ones and being treated with dignity. This is entirely consistent with what older people tell our Advocates they want to achieve when describing a ‘good death’.
More GPs are having conversations with people about their end of life care wishes but 25% still say they have never initiated such a conversation.
OPAAL welcomes this new report commissioned by the LGA calling for an increased investment in preventative health and social care.
The government urgently needs to invest £5.2 billion over the next four years to overhaul the health and social care system, according to a report commissioned by the Local Government Association.
The report by Ernst and Young calls for the government to divert £1.3 billion from the budget each year over the next four year to develop a new health and social care system.
Data shows that around 30% of health and care service users take up over two-thirds of the health and social care budget.
The proceeds from the transformation fund have been recommended to be used on preventative measures, especially for long-term conditions which cost the health system an estimated £88 billion per year.
The LGA report suggests that the extra financing could keep elderly and disabled out of hospital and healthier for longer rather than putting money into the most serious conditions so that the long term state of the health and social care system is improved.
Cllr Izzi Seccombe, Chairman of the LGA’s Community Wellbeing Board, said: “We need an urgent and radical change to the way in which we provide care for the elderly and disabled.
“It is social care services which keep people out of hospital and living in the community for longer. Social care and health are two sides of the same coin – it is quite clear that without adequate funding, social care simply cannot alleviate the pressure on the NHS.
“The Government needs to invest money in a system which will be there to look after people now and in the future, and commit to a long-term strategy to ensure that people get the care they need.”
We believe this includes ensuring that all older people who need independent support to access the care they need and want to maintain wellbeing deserve to access this support, and if necessary independent advocacy to ensure their voice does not get lost in the system.
Older People Living with Cancer 