Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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How I (Try to) Avoid Advocacy Burnout

One of the many benefits of working with health professionals, in this case Dr Charles Campion-Smith who sits on our National Health Professionals Board, is that they often so freely share valuable information. Charles has introduced me to a smart phone (iphone and Android) app that may well be useful to advocates and patients.

The Cancer.net app is from the US but parts are very relevant to UK.

In particular the ‘Questions’ tab takes you to a page where someone can write questions (or select a number of provided ones) they want to ask – typically in a consultation.

The app then allows the anwsers to be recorded on the phone.

Audio taping consultations has been used successfully for some time but this is much less cumbersome and preparing questions together might be useful to advocate and patient.

I explored this app and came across a very interesting article written by Anita Mitchell which I know will be of great interest to our own advocates. I have now secured the relevant permissions to reprint this article in full and would like to thank Anita and the American Society of Clinical Oncology for allowing us to share this article.

Voices on Cancer is a Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Anita Mitchell was diagnosed with stage IV colon cancer in 2005. She is the cofounder of the Colon Cancer Stars of Washington State.

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My advocacy story
I had not planned to become a colon cancer advocate. It is something that I just became. I suppose after everything that happened to me, I had to find meaning and purpose in my diagnosis.
I fell into advocacy in 2005, when I was diagnosed with stage IV colon cancer after just turning 41. The fact that my primary care doctor disregarded my symptoms and missed my diagnosis fueled my passion to become an advocate for prevention and a voice for those diagnosed at a young age. I was the third parent at my children’s school to be diagnosed before turning 50, which is the recommended screening age for colon cancer. So, I began educating families about screening and the symptoms of colon cancer. One of the first ways I did this was by starting an awareness day at my children’s school—I called it Dress in Blue Day. Years later, it became a national event!
I wanted to spread the word. After I learned how preventable my case was, I didn’t want this to happen to anyone else! But there were other things going on in my life as well. I was fighting for my life, trying to raise my 3 kids, and dealing with a crumbling marriage. It was a lot to balance.
Still, I started getting involved with some local cancer survivor programs. Then I began volunteering for LIVESTRONG, American Cancer Society, Colon Cancer Alliance, Fight Colorectal Cancer, and Gilda’s Club. Soon after, I found myself on committees for my hospital and state. I even posed for the Colondar for the Colon Club!Eventually, I started my own nonprofit, Colon Cancer Stars of Washington State, with the help of my Washington State Colon Cancer Task Force.
Advocacy is needed to give patients and survivors a voice when cancer becomes faceless. I clearly remember sitting at the ASCO Annual Meeting one year as a patient advocate. I was still on chemo, listening to the doctors talk about how a drug gives you maybe 1 extra month of life, wondering if the cost was worth it. I wanted to jump up and scream, “Of course it is!”
In the end, I got very lucky and was out of treatment after only 2 years. Even though I survived, I still lived from scan to scan and needed to find meaning in my life apart from my familly.
Handling advocacy burnout

When you are an advocate, you are smacked in the face with limited time and tons of things you want to do and achieve. You have to quickly learn to prioritize what is important. If you don’t, you can get burned out on advocacy.Here are some of the strategies I use to try to keep burnout away.

• Learning to say no. I quickly learned I would have to become comfortable saying no to different requests. This was not always an easy thing for me to do. I realized that I had to believe what I did was worth my energy and my time.
• Keeping balance. This is very hard for me, so I like to think of my life as a pie, and cancer is a slice of it. Sometimes I have a few slices, but if it becomes too many, I know I need to take a break. Cancer affects the whole family, so I had to be mindful that sometimes my children did not want to hear about colon cancer advocacy. For them, it was enough that they had almost lost their mother to it!
• Find support. I have learned to reach out for support from close friends who are cancer advocates. They understand the sadness and frustration of losing people to the disease because of the slow pace of science, politics, or lack of funding.
• Step away when you need it. Like they say during the airplane safety messages, “Put the oxygen mask on yourself first before helping others.” I have found this to be the case in cancer advocacy, especially when it comes to online help. These groups can be overwhelming at times, and sometimes you need to turn off the computer for a while. So when I need to, I step away for a bit and I do not let myself feel guilty about it.
• Seek what is meaningful and joyful in your advocacy. I try to slow down and analyze what brings me joy and a sense of meaning. I look for signs that I am going in the right direction. Sometimes it is a simple note saying, “Thank you, I got screened after I read your story in the paper” or “I slept all through the night for the first time since my diagnosis after I talked to you.” I once had someone say she kept my story in her pocket. You never really know how many people your story will touch or even save, but it is many more than you will ever know. So I choose to carry on!

Anita Mitchell Voices on Cancer


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Final report of the VCSE Review launched

Excellent report well worth a read for all of us engaged with offering health and social care support to all those who need it.

VCSE Review

Alex Fox is CEO of Shared Lives Plus and independent Chair of the Joint VCSE Review. Read the final report.

The goal shared by everyone who delivers and organises health and care services is wellbeing: its creation and its resilience. Whilst we do not want to spend increasing proportions of our lives in medical nor social care, we will all draw upon primary, acute or specialist services at various points in our lives and we want to find them available, caring and well run when we do. However, whether for people with lifelong disabilities, the ever growing older population or those with long term health conditions and support needs, our dreams remain rooted in living well at home as part of welcoming, inclusive communities. To achieve that goal, we need health and care systems which are organised around and support our lives: which can reach us in our homes…

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Lynne’s experience of setting up care for her husband.

Lynne Wright is a member of our National Health Professionals Board. All members of this board are volunteers who give their time freely to advise us on how best to work with our health professional colleagues to increase referrals into our independent advocacy support service.

Lynne wrote the post below explaining her recent experiences arranging care services for her husband. I’m grateful to Lynne for sharing her experiences which highlight the great need faced by so many older people who do not have someone like Lynne to speak up for them.

On the first of October, my husband had a fall that resulted in brain damage. He was in hospital for ten days, home with the services of ‘Hospital at Home’ for almost four weeks, and then discharged leaving me to sort out an agency to take over his care. A social worker was appointed for him and a care plan worked out on paper. Putting this care plan into action has been so time consuming and even now, five months later it is still not fully in place – as we are still trying to arrange what they call his ‘enabling’. We are getting there, and life is getting back to ‘normal’ or as normal as can be but it has made me realise how very difficult it must be for some older people to cope with this type of problem. I am lucky, I live in an area where I have good access to good services, and I am capable of chasing people but I have found it very frustrating trying to get through all the bureaucracy involved. Not to mention dealing with all the financial matters.

My husband’s care plan is now working quite well, I am able to get away for the day, stay overnight, and will be away for four nights this week. Arranging cover requires having good organisational skills and a pool of people and services that you can rely upon. My thoughts regarding this relate to older carers, many who may have mid dementia or who find it all too complicated and frustrating to organise. The new Care Act does have provisions for carers, but accessing a full Carers’ Assessment is almost impossible to arrange – you have to know your rights and be firm and insist upon them – again this might be difficult for many carers.

I am a cancer patient and many cancer patients find themselves in very similar circumstances to those I have mentioned above. Many older patients are on long – term treatment and have little or no support and find they just do not know where to turn or what to do. This is where Independent Advocacy is so important and just knowing they have someone they can turn to for help and support can make such a difference to their wellbeing.

Lynne Wright: Member of the Cancer, Older People and Advocacy Health Professionals Board


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New National Cancer Director outlines future vision at London conference

“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.


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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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Ensuring accountability when older people can’t speak up for themselves

Wendy, a former magistrate, is 81 years old. She has lived in her home for 32 years. Wendy has recently developed severe dementia. Her son John cares for her at home, with the help of the local authority. When social workers ask Wendy about some scratches and bruises she can’t remember how they happened. The social workers decide to visit Wendy when John was out shopping and take Wendy away to a nursing home. They had no authorisation to do this.

When he returned home, John could not find his mum and no one told him where she was. It took John 19 days to find Wendy, and only after he had asked a lawyer to write to the council to try and locate her. John wanted to visit his mother, but because of the unexplained injuries, the council restricted John and Wendy’s contact, despite not investigating how the injuries had occurred. John and Wendy were not allowed to meet unsupervised for more than a year.

After sixteen months, the council dropped its (uninvestigated) allegations of abuse against John. The family decided to take court action because they believed keeping Wendy in the care home was a breach of her right to liberty, which is protected by the Human Rights Act (Article 5).

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The judge found the way the council had handled their concerns about Wendy’s welfare was ‘woefully inadequate’. They had not investigated whether she was at risk before they took her away from her home, and they had not got the correct authorisation to keep her in a care home. Therefore, the local authority had breached Wendy’s right to liberty. In addition, the judge said the council had breached her right to respect for her private life in her own home, protected by the HRA in Article 8. This right also protects Wendy’s right to a family life with her son, John, which was breached when their visits were restricted. Wendy and John are now free to visit whenever they want.

To learn more of the work of the British Institute of Human Rights please visit their web site here https://www.bihr.org.uk/


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Helping an older couple live in the same care home

Dora and Simon had been married for 59 years. Dora was blind and had recently developed Alzheimer’s. She and Simon were injured in a fall at home, and Simon was no longer able to care for her while he recovered. During this time, Dora was moved into a local publically funded nursing home.

It became clear that Dora would have to stay in a nursing home, but Simon visited her every day. However, their relationship was threatened when the local authority decided to move Dora into a permanent nursing home that was too far away for Simon and their children to visit.

 

Simon contacted Counsel and Care. They helped Simon to challenge the decision to move Dora on the basis that his and Dora’s right to family life under Article 8 of the Human Rights Act was threatened by the move and the local authority needed to consider this right when making their decision. This helped Simon to persuade social services to allow Dora to remain in the nursing home close to her family and to Simon.

Source: BIHR & EDF ‘Human Rights and Equality in the Voluntary Sector’ (2010)


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Is peer support part of the solution to future-proofing the NHS, asks Johanna Ejbye

This blog first appeared on NHS Voices www.nhsconfed.org/blog on 15th June 2015.  I would like to extend my thanks to both NHS Confederation and Johanna Ejbye who have kindly allowed us to reblog Johanna’s post on peer support here.

Johanna-Ejbye
A couple of months ago, I visited Maggie’s Centre West London. The centre is based right next to Charing Cross Hospital and offers free, practical, emotional and social support to people with cancer and their families and friends. The building itself is a beautiful and calm oasis, full of daylight, bright colours and spaces for conversation and reflection. It’s the type of place that is reassuring to know exists.

I was struck by one thing from the conversations I had with staff and the people using the centre. While the professional support on offer was key and hugely valued, it was the centre’s role as an open space for sharing thoughts and experiences with peers that was highlighted again and again as the central anchor when receiving a cancer diagnosis, throughout treatment and beyond. People made friends at the centre, they swapped tips, had fun together and supported each other when things were tough.

Maggie’s Centres are a brilliant example of what we at Nesta call ‘More than Medicine’¹. The centres function as a natural extension of clinical work, taking the starting point of the individual and what matters to them. And what matters to many people using the centres is the opportunity to receive informal, or formal, support from their peers.

This chimes with a research review of more than 1,000 published studies which we recently conducted with National Voices. The aim was to better understand which types of peer support are most effective, what costs they incur and what benefits they bring.

Overall we found that peer support is worth investing in as a way of supporting people living with long-term health conditions. There are potential wide-reaching benefits: better mental and physical health, cost savings, and wider social value. However, we also found that the research base is still in development and that there is little research that adequately assesses cost-effectiveness or would help commissioners to build business cases.

The bigger picture: the NHS as a social movement

Plugging the gaps in the research is becoming increasingly important. The NHS Five Year Forward View set out a vision for the NHS to develop a new relationship with patients and communities and support people with a long-term condition to manage their own health and care.

The background for this is twofold. Firstly, life expectancy has increased as people live longer and some, with one or several long-term conditions, for many years. This calls for a healthcare system that looks beyond curing people from acute and infectious disease.  We need to be able to support people to live – and live well – with long-term health conditions.

Secondly and equally important, the Forward View sets out how the NHS of the future needs to transcend organisational barriers and become not ‘just’ a national health service but a national social movement for better health. We all have a role to play in looking after our own health and the health of others – and the NHS has a role to play in making it easier to do so.

In effect, peer support is an example of how social movements and networks can benefit the health and wellbeing of an individual. It is therefore vital that we get much better at understanding the costs and benefits of peer support, and putting the existing knowledge into practice.

Nesta and National Voices are working together on Realising the Value, a new initiative to find, test, and share the best ways in which people with health conditions work with their communities and health professionals. Realising the Value is delivered by a large consortium of partners with a strong track record and expertise in the area of putting people at the centre of their own care.

A quote from one of the visitors at Maggie’s Centre West London describes how cancer “hijacks your life and drops you into a situation where you have to learn a new language”. In our vision for a person-centred, people-powered health system, the support of peers, family and friends complements clinical and professional services to form an integrated whole. Learning the language of a new condition is never easy, but it helps to learn together.

To follow progress and findings from Realising the Value please sign up to our mailing list.

¹ See also our work on People Powered Health, our recommendations for boosting citizen participation and volunteering in health, or the Nesta and Cabinet Office Centre for Social Action Innovation Fund to test different types of peer support and gather evidence on them.

Johanna Ejbye is a senior programme manager in Nesta’s health and ageing team.  Follow the organisation on Twitter @nesta_uk


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Pat Wallis – My Cancer Journey and How It Led Me to Volunteer For SPAC

I was diagnosed with breast cancer 9 years ago and underwent lumpectomy, chemotherapy and radiotherapy.

I cannot fault the treatment I received from Southport Hospital, in association with Clatterbridge. The breast cancer specialist nurses were wonderful and very supportive and informative. However the health professionals can only give you so much help, you need the support off others to help you cope.

Entering the world of cancer and going through the treatment pathway you experience a roller coaster ride of emotions. Initially there is the shock of diagnosis, with questions such as how advanced is it? Has it spread? These questions can take time to answer as there are tests to undergo. It is hard to explain to someone how stressful it is waiting for the results and to find out what treatment you will receive. You certainly need the help of someone to go through this with you. At appointments you may hear what is said but not take it in and thus having someone else there, when you see the cancer specialist, can make a significant difference. Once you know the treatment pathway you are going to receive there are many other concerns. If you are going to have chemotherapy you feel very apprehensive. Much of what you hear about chemotherapy tells you how awful it is. You wonder how ill will I feel, am I going to be very sick, will I be able to go out, what will it be like without my hair, will I suit my wig.

Hospitals can be very daunting places, even if you are confident and not afraid. I remember waiting in a cubicle with an unflattering gown on wondering if I had been forgotten. Once you are on treatment you may still have questions to ask the cancer specialist. It helped me to make a list and have someone accompany me to the specialist or my treatment.

Pat Wallis

Pat Wallis

If you are still working there could be financial concerns. You may be off work a long time and may need support in identifying your rights re sick pay and any benefit entitlement. I was fortunate in that the company I worked for paid me full pay throughout but this is not the case for everyone.

When you are on treatment you feel secure, as you are seeing health professionals regularly. However once you have finished treatment you can feel as though you are alone and have to start adapting to life again. However you still have the stress of check-ups and learning to live as a cancer survivor, which can be extremely frightening. Another hurdle you may have to overcome, if you are still working, is your phased back to work and you may need help to explain things to your employer.

My own experience of undergoing cancer treatment was very positive and as I have stated I cannot fault the treatment I received. I tolerated chemotherapy well and it was not an awful experience for me, I only missed going out for one day. When I lost my hair there were some benefits to wearing a wig, no bad hair days and I saved a fortune in shampoo. I was lucky that I had no financial problems. Throughout my treatment and after I was extremely lucky to have a supportive network of family and friends around me. However I recognised that there would be some people without family or friends to support them through the journey.

I decided to volunteer for the Cancer Older People and Advocacy project with Sefton Pensioners’ Advocacy Centre as I felt I could use my experience to support others. I recognised that my experience enabled me to support people, with cancer, from a standpoint of understanding the issues and concerns they were experiencing. I know that I could not have managed without the support of my family and friends and therefore understand how important it is to have someone else on your side. Having recognised the difference that support made to me I wanted to be that person for others. I enjoy what I do and the difference it makes. Given the choice to volunteer again I would still make the same decision and would encourage others to think about the positive impact they can have by offering their time to volunteer.

Pat Wallis
Peer Volunteer Advocate
Sefton Pensioners’ Advocacy Centre (SPAC)


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Reuniting separated older couple

Beryl and Richard Driscoll had been married for over 65 years. They had spent very little time apart and by 2006 she was blind and he could not walk unaided. He was her eyes and she helped him to walk. When Mr Driscoll fell ill, the local authority moved him to a residential care home. Mrs Driscoll was not allowed to go with him, as she did not fit the criteria, and they only saw each other twice a week for 7 months.

Speaking to the media, she said ‘We have never been separated in all our years and for it to happen now, when we need each other so much, is so upsetting. I am lost without him – we were a partnership’.

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A public campaign launched by the family, supported by the media and various human rights experts, including BIHR, and older people’s organisations, and independent advocates argued that the local authority had breached the couple’s right to respect for family life (Article 8). The authority agreed to reverse its decision and offered the wife a subsidised place so that she could join her husband in the care home.

See here for further stories about how human rights protect us all. https://www.bihr.org.uk/