In today’s blog post Kathleen Gillett from Dorset Macmillan Advocacy looks at the issues facing older people affected by other long term conditions as well as cancer:
Coping with cancer is one thing, coping with cancer and one or more other long term condition is another. Peer advocates listen to the people they support to discover what matters most to them and may be surprised to find that having cancer can be the least of their worries.
At Dorset Macmillan Advocacy we have collected some information on the long term conditions and health problems that the people we are supporting are living with. We have found that of 110 people referred to us for support in 2015 50 have at least one other long term condition, 26 have two conditions including drug and alcohol dependency issues and 7 have 3 conditions. The conditions include sensory loss, diabetes, heart condition, memory problems, arthritis, MS, ME, epilepsy, hiatus hernia and mental health issues. Not everyone wants to disclose all their health issues and we have not in every case methodically recorded where this information has been given so I think it is safe to say that there are likely to be more issues than we actually know of.
In fact 70% of people with cancer have one or more additional long term condition according to research carried out by Macmillan Cancer Support. It’s clear that the situation for people with limited social support networks, such as older people, can be very difficult. Independent advocacy services such as ours can be flexible and support people with their concerns when they are wider and more complex than the cancer diagnosis.
Health professionals are aware of the implications especially as regards treatment options for older people. The British Geriatric Society has a special interest group (SIG) for Oncology which met for the first time last September and Kath Parson of OPAAL gave a presentation about the Cancer, Older People and Advocacy programme. In a write-up of that event Dr Lucy Dumas said ‘Older patients with multiple medical co-morbidities and/or issues with care or coping at home represent a significant challenge when it comes to evaluating whether or not they will be able to tolerate potentially toxic therapies’.
Over the next year we hope to gather more information about the wider health issues of the people that we support. As well as asking for their feedback on the difference our service has made we may be able to gather their views on how their other conditions have impacted on their cancer patient experience.
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.
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.
Helen Vernon, Advocate, Sefton Pensioners Advocacy Centre (SPAC)
The Patients Association is conducting a survey alongside the Royal College of Radiologists to investigate how long patients are waiting for x-ray and scan results. If you or a family member has recently had one of these procedures, they want to hear from you.
They are keen to gain evidence of the progress towards achieving the Government’s 2020 target of 28 days from referral to test result. This target was created in order to help prevent the deaths of 11,000 people per year.
All personal details you supply will be held only by the Patients Association and the Royal College of Radiologists, and will remain secure and confidential.
“We want to have the best cancer care. Anywhere.”
Those were the words of new National Cancer Director Cally Palmer CBE as she addressed attendees to the Britain Against Cancer conference hosted yesterday in London by the All Party Parliamentary Group on Cancer (APPGC).
The annual event, which featured a keynote speech by Secretary of State Jeremy Hunt and was also attended by NHS England’s National Clinical Director for Cancer Professor Sean Duffy, is one of is one of the largest conferences of its kind in the UK.
Miss Palmer, who is Chief Executive of the Royal Marsden Hospital NHS Foundation Trust and joined NHS England as National Cancer Director in November, praised the vision set out by the Independent Cancer Taskforce and outlined some of the ways she will lead implementation of the recommendations of its report.
Miss Palmer said: “Back in September NHS England announced a new ‘Cancer Vanguard’: three sites which will come together to trial new ideas and approaches to the commissioning and provision of cancer services, including testing capitated budgets from April 2017. We expect this to begin to teach us about what works and what doesn’t almost immediately.”
“In response to the recommendation by the Taskforce report, we’re also establishing Cancer Alliances across the country from April next year, which will be the cornerstone of delivering changes at a local level.”
Miss Palmer announced a new Cancer Transformation Board to lead the rollout of the other recommendations of the Taskforce report, and a Cancer Advisory Group, chaired by Harpal Kumar, Chief Executive of Cancer Research UK, to oversee and scrutinise their work.
Miss Palmer also presented the first prototype of a new Cancer Dashboard to measure progress with a focus on incidence, survival rates, patient experience and quality of life for patients.
“From April 2016 every CCG will be able to see their own data in this format and will be able to benchmark themselves against other CCGs.
“This was the first of the 96 recommendations that the Taskforce gave us, and we have made it a priority. We all need to be clear what we’re working towards, and a unified set of measures is fundamental to this.”
OPAAL welcomes these initiatives and looks forward to collaborating with Macmillan on their roll out, in particular discussions around influencing the new Cancer Alliances across the country from April 2016.
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.
Bone Cancer Research Trust is carrying out a national survey into the experience and impact of primary bone cancer on patients and their families. Please could I ask for your help in sharing news of our survey with your blog readers?
Ahead of our 10th birthday in 2016, BCRT is undertaking an extensive project that will help shape our future vision and plans by ensuring that the needs of our stakeholders (patients, families, healthcare professionals, clinical researchers, fundraisers) are at the heart of what we do.
As part of our project, we are conducting a national survey to capture the views and experiences of people whose lives have been affected by primary bone cancer. We hope that it will be one of the biggest studies of its kind.
Chondrosarcoma is a type of bone cancer which mainly affects people over the age of 50. Because primary bone cancer tends to affect young people and young adults, older patients are a much-neglected voice. We want to ensure that our national survey reaches older patients so that we can actively take their views and experiences into consideration.
We will share our research findings publically once our project is complete – we expect this will be in March/April next year.
There is some text below to help you share news of the survey. If you have any questions about our stakeholder research, please let me know. Otherwise, my thanks in advance for your help in distributing this.
Thanks and best wishes,
Catherine Newman
Bone Cancer Research Trust is conducting a national survey designed to capture the experiences and views of primary bone cancer patients and their close families/friends.
Adding your voice to their research will help shape their future plans, and create an up-to-date body of evidence about the impact of primary bone cancer.
Click on the survey link to take part , and don’t forget to share it with anyone you know who has also been affected by primary bone cancer: http://bit.ly/1Kln6VL
You can find out more about Bone Cancer Research Trust here
Help shape BCRT’s future vision and plans by taking part in our national survey on people’s views and experiences of primary bone cancer. This is open to patients, and their close family/friends.
Emma Voglemann, a volunteer for the British Institute of Human Rights(BIHR), writes about why human rights are so important for advocates:
For advocates, human rights are a shared language of duty and respect that can be used to achieve good outcomes out of court. The Human Rights Act means that public authorities have a legal obligation to respect human rights when they make any decisions involving a person’s life. Advocates can raise human rights in discussion with a person or public authority and they can use human rights to give older people a voice in decisions about their own life, even if they may not have capacity for that particular issue.
BIHR have worked with older people and advocates to help them understand and benefit from human rights. In our Guide for Older People we encourage older people to know how to utilise their human rights by recognising situations where rights may be at risk and how to seek help. Through our partnership work, those we work with have used the Human Rights Act to achieve real outcomes.
Human rights advocacy in real life: Using the Human Rights Act to challenge blanket use of tilt-back chairs in a nursing home.
Laura is a consultant who works with older people, and having worked with BIHR is a keen proponent of human rights in NHS services. She was visiting a nursing home in London when she saw several residents were effectively trapped in special ‘tilt-back’ chairs. The chairs were being used because they stopped people in the home from trying to get up, falling and hurting themselves.
Sadly, this meant many older people who could walk weren’t able to get up and out of the chairs. Instead they had to wait for staff to come and get them out of the chairs so they could go to the toilet or go and get something to eat. The residents at the home who were previously very independent could no longer choose what they wanted to do with their days, and because they couldn’t walk around very often, they started to find walking very difficult.
Laura was concerned this practice in the home raised human rights issues. She talked to the residents who were kept in the chairs, who told her they felt their dignity and independence was being taken away from them. Laura realised that by not allowing the residents who could walk the freedom to move around, their dignity and autonomy, protected by the right to private life in the Human Rights Act (Article 8) was being risked. She was also concerned that for some of the residents, it might even be inhuman or degrading treatment, which is never allowed under the Human Rights Act (Article 3). Laura raised her concerns with the staff and using human rights language they were able to see that treating all of the residents the same in order to protect the few who needed the tilt-back chairs was not appropriate. Residents who could walk were no longer placed in the tilt back chairs and staff encouraged them to start using their walking skills again.
BIHR’s project work with older people and advocates
Through partnership projects with older people’s groups, including local branches of Age UK, we have worked to empower older people through training around how to use the language of human rights in their daily lives and to influence service delivery and policy.
Through this work one group of older people in Derby made a DVD on the issues facing older members of the lesbian, gay, bisexual and transgender (LGBT) community who live in residential care, which received extremely positive feedback. (Watch the film here). Another group looked at the lack of public toilets and transport links, which helped them collaborate with other groups affected by this issue, such as disabled people and mothers with young children. They raised awareness about this issue and engaged with local officials.
If you’d like to find out more about our work with older people, or to find out more about how advocates can use human rights, check out our resources aimed at advocates and older people. All BIHR’s resources are freely available here.
These are terms that we are used to seeing in the context of independent advocacy support. I have in fact picked them out of the revised Code from regulator, the Nursing and Midwifery Council (NMC). Although my own background is not in health I was familiar with the previous Code from 2008. Section 4 of that version states ‘You must act as an advocate for those in your care, helping them to access relevant health and social care, information and support’. At Dorset Macmillan Advocacy as part of the training for our volunteer advocates we had discussed how this might make health professionals more open to the support that we can offer but how it might also lead to them seeing it as unnecessary since they already act as advocates for their patients.
The revised Code has widened this aspect considerably and now says: ‘Make sure that people’s physical, social and psychological needs are assessed and responded to. To achieve this, you must: … act in partnership with those receiving care, helping them to access relevant health and social care information and support when they need it, and act as an advocate for the vulnerable, challenging poor practice and discriminatory attitudes and behaviour relating to their care.’ The NMC says that the Code has been written with the input of many patients, carers, nurses and midwives. It is shaped around four statements, which state that good nurses and midwives will:
Prioritise people • Practise effectively • Preserve safety, and • Promote professionalism and trust.
Jackie Smith, NMC Chief Executive and Registrar, said on 31st March: “This is a landmark day for every nurse and midwife in the UK, and for the people they care for. The Code is fundamental to protecting the public. It sets out what patients want from nurses and midwives, and puts public expectations at the centre of professional practice.” Macmillan Cancer Support have noted that ‘The changes to the code include new sections that outline professional duty of candour, and the responsibilities of all nurses and midwives to raise concerns. The focus of the revision is to drive continuous improvements in the quality and safety of care.’
I asked one of our own volunteer advocates with a unique perspective, since she is also a practising nurse, whether she felt that the revised Code would make it easier for our peer volunteer advocates to work with health professionals in supporting their advocacy partners. She said “The new Code will bring benefits regarding better communication between health staff and advocates. We now have the professional duty to facilitate communications among everyone that is taking care of a person. The new code has underlined even more the centrality of the patient, which means ‘do the best for them’, and implies cooperation among all their carers. Another important point that for me from the advocacy perspective is that nurses have to delegate to whomever can do the best for the patient and can complete the task at the required standard, even if they are not a health worker.”
I really recommend reading the revised Code to get an insight into what the NMC has found to be the most important aspects of patient and public expectation. The Code is extremely readable and well-constructed. We will be referring to it in our volunteer training. Indeed many of the requirements of nurses would be transferable to the role of independent advocate especially those concerning clear communication: ‘use terms that people …can understand, use a range of verbal and non-verbal communication methods…check people’s understanding’.
Most importantly for me the Code recognises for the first time that a patient may be supported by an advocate and mentions the role directly in the third section entitled Preserve Safety. ‘Be open and candid with all service users about all aspects of care and treatment, including when any mistakes or harm have taken place. To achieve this, you must… explain fully and promptly what has happened, including the likely effects, and apologise to the person affected and, where appropriate, their advocate, family or carers.’ I feel that the revised Code will serve as a strong foundation for effective cooperation between peer volunteer advocates, their advocacy partners – the older people affected by cancer, and the clinicians delivering their treatment and care.
Evidence of the impact of small, community-based services is often hard to convincingly portray. We can tell stories about the people who have used our services. These stories generally generate positive responses about how “obviously” a good service is being provided. However, when it comes to securing on-going funding for services, more robust evidence is required.
This is the situation I was in a few years back when I was a Macmillan Information and Support Service manager of an innovative service based in Manchester’s community libraries. We were lucky, after 3 years of Macmillan funding, I was able to secure another 3 years of funding from The Big Lottery. My experience of running the service, and the endless task of proving its worth, spurred me on to complete a MSc in Social Change at The University of Manchester. I enjoyed the experience of returning to study, and now I am researching full-time towards a PhD focussing on the social support needs of older cancer patients.
Through my research I have maintained contact with Macmillan and established new links with OPAAL and the Cancer, Older People and Advocacy project. The work being carried out by the Cancer, Older People and Advocacy delivery partners directly parallels with my theories about the support needs of older cancer patients. The stories that are shared through this blog highlight the important and valued role that the cancer advocates are playing.
Patty
I am now in the position to support the evaluation of the Cancer, Older People and Advocacy project by conducting independent research into the impact of advocates on the experiences of older cancer patients. I am hoping to travel to several of the Cancer, Older People and Advocacy delivery services to carry out interviews with older cancer patients who have used the services, hear their stories, and draw together an analysis of the impact of advocacy.
So far, I have interviewed two people who have used the ICANN service. Recruitment of participants for this research involves the support of the advocacy organisations involved, and I am very grateful for the support from Janet Cullingford from ICANN for her support in arranging the first two interviews. Recruitment is dependent on the organisations’ advocates and workers, and requires negotiation and in some cases persuasion on their behalf to get participants on board. However, the potential benefits are high. Hearing the stories of older people affected by cancer who have used an advocacy service provides a contrast to the more common ‘expert patients’ used in many other qualitative studies.
Patty with Janet from ICANN
Listening to the stories of older cancer patients provides important insight into personal experiences of having cancer treatment. From these experiences we can learn about how the principals of shared decision-making are applied in treating cancer, if indeed they are. Initial findings suggest that from the patient’s perspective there are limited decisions to be made, and health professionals are trusted and relied upon to make the treatment decisions.
Support during the cancer journey is highly appreciated, especially post-treatment. One older person said that “without [my advocate’s] support I don’t think I would have got through it”.
However, more interviews are needed to explore these initial findings further. I am now hoping to recruit several more older cancer patients to be interviewed. For more information, contact Patty Doran, Cathie Marsh Institute for Social Research, The University of Manchester, patty.doran@postgrad.manchester.ac.uk
Pat Vinycomb, Local Ambassador for Dorset of Carers UK, spoke at the recent Carers Meeting at Royal Bournemouth Hospital. The meeting was organised by the Patient Engagement Team and coincided with the launch of pages for carers on the Trust’s website.
Pat’s keynote address ‘Think Carer: Supporting Carers in a hospital environment’ invited the carers present to reflect on when it was that they realised that they had become a carer and the feelings associated with the realisation that life would never be the same again. In the hospital environment, said Pat, carers should be recognised for their skills and knowledge, feel valued, have the right information and advice and the choice to say no. She outlined the challenges facing carers who need to understand what has happened and where to go for further help and advice. She also explained the anxieties that carers may feel: ‘Can I ask staff a question and/ or challenge?’.
It was clear that Pat spoke from her own experience as she described a tendency for carers to feel they must hide their emotions and the inner conflict they can feel. She emphasised to the nursing staff present that little things really do mean a lot to carers: somewhere to be private, comfortable seating, refreshments, as well as kindness, empathy and hope. Above all good communication from hospital staff and being kept up to date is important for carers.
L-R Pat Vinycomb, Ambassador – Carers UK and Marion Summers, volunteer advocate – Dorset Macmillan Advocacy
Pat’s presentation finished with a summary of the many types of practical help and support available to carers in Dorset, Bournemouth and Poole and she urged carers to remember that their own health matters. The carers then took part in facilitated discussions to generate feedback for the engagement team.
Later I talked with Pat and with our volunteer advocate Marion Summers (also a carer) about the support that Dorset Macmillan Advocacy can provide to carers. Carers can be empowered by advocacy support to know their rights and feel more in control. I was grateful to the Patient Engagement Team to be invited to the meeting and to be able to provide an information stand. After Pat’s talk I personally had a much better insight into the challenges facing carers when the person they care for is staying in hospital and we hope to involve Pat in our volunteer training in future.
During national Carers Week from 8 June Jo Lee, Senior Macmillan Advocate at Help and Care, and other Dorset Macmillan Advocacy staff attended a number of events to raise awareness of our service among carers. The Carers Week campaign this year focused on Carer Friendly Communities and produced this useful Checklist tool for carers which includes a section on Health: Carers Week 2015 Checklist.
Older People Living with Cancer 