Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Calculating the cost/benefit of advocacy

Today, we’re absolutely delighted to be able to bring you the final film from our Older People’s Cancer Voices work.

George, Varun and Carmela from EY (formerly Ernst & Young) explain how it is they came to report that for every £1 invested in our cancer advocacy work, there is a £6.70 social, financial and economic return.

George talks about how working with the real life cancer advocacy stories we provided has opened his eyes to the fact that for those affected by cancer, “everybody’s story is different”. Using the data and stories we provided George and his team sought to “get behind the numbers and got into the detail of what those numbers meant for people’s lives in reality.”  

George

Varun explains how anything in society that we do has a social return on investment, “because they’re associated with uplifting the welfare of a society.”

Varun

Carmela discusses how when looking at issues of Voice Choice and Control, they could see how the support of an advocate gave people the wherewithal to once again make decisions for themselves.

Carmela

George describes advocacy as a matchmaker, its support “helped people access things that are already there and that’s why it was able to create big returns for a low cost”. 

You can view the film here

and access the EY report via the OPAAL website

Marie McWilliams, OPAAL

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Is a Lasting Power of Attorney still the answer?

Today solicitor Amy Lloyd of leading law firm Wright Hassall explains why she believes a Lasting Power of Attorney remains the answer at a time when the rationale for using them is being questioned:

Denzil Lush, until recently the most senior judge in the UK Court of Protection, stated that he would never sign a Lasting Power of Attorney (LPA) himself.

An LPA allows an individual to choose who they want to make decisions on their behalf should they lack the mental capacity to make those decisions in future. Lush warned the system lacks the necessary safeguards and puts vulnerable people and their assets at risk.

However, Amy believes the risks are overstated:The adverse publicity created by these comments could put even more people at risk if they choose not to make an LPA.

Mental Capacity Act imposes accountability

An attorney’s responsibilities are set out in the Mental Capacity Act which is underpinned by five principles designed to provide the necessary safeguards. Anyone can report attorney financial abuse of a vulnerable person to the safeguarding unit at the Office of the Public Guardian.

Although Lush appears to favour Deputyship Orders, there are drawbacks to them, starting with their cost as they require the provision of annual accounts to the Court, and the purchase of a security bond to cover financial losses.

They also require a full list of assets, which an individual may not want disclosed, particularly if they have fluctuating mental health problems, rather than a deteriorating health condition. If you suddenly became incapable of managing your finances, even a trusted relative or friend would struggle to help you without an LPA. Remember, your bank will not deal with anyone other than you, the account holder.

Amy Lloyd

Adding clauses to an LPA for peace of mind

An LPA ensures that your affairs are managed by someone you choose, rather than someone chosen by the Court of Protection. With a solicitor’s help, you can add clauses to the standard LPA form to help avoid potential abuse, such as insisting your attorney provides annual accounts to three named family members and your accountant.

Is this better or worse than providing annual accounts to the Court? The family members or accountant could report any concerns to the safeguarding unit.

Including such a condition in your LPA would answer Lush’s concerns that the LPAs “lack of transparency, causes suspicions and concerns which tend to rise in a crescendo and eventually explode”.

Alternatively, you could appoint several attorneys to monitor each other. But that opens your finances to greater scrutiny within the family which you may not welcome.

Retired Judge Denzil Lush’s statement that he would never make an LPA, was an endorsement of a Court Deputyship Order. If you want to retain some control beyond incapacity, the LPA is still the right choice, together with some carefully worded conditions.”

About Amy: Amy Lloyd specialises in estate and succession planning including drafting Wills, inheritance tax planning, Trusts (formation and administration), guarding estates against care fees or potential claims by estranged family members, mental capacity issues including powers of attorney and deputyship orders.


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The many benefits of volunteering at any age

Last year Tessa Watts described what she was learning from her first experience as a peer volunteer advocate with Dorset Macmillan Advocacy.   Since then Tessa has supported several more advocacy partners but she has also continued to develop her skills with two other related roles.  Tessa described her studies and her interest in health coaching at interview so when opportunities arose we ensured that Tessa heard about them.  As a result Tessa is now a trained lay facilitator with the Macmillan HOPE course.  HOPE (Helping to Overcome Problems Effectively) is a licensed programme developed by Coventry University and Macmillan Cancer Support to help people who have had/or have cancer to get on with their lives.   More recently Tessa has begun a part time role at Help and Care as a Health Coach with My Health My Way which provides personalised support to people with long term conditions.

Tessa Watts

 

Through her initial link with us Tessa is now involved in three different approaches to self management; independent advocacy, group peer support and one to one coaching. Tessa says, ‘I decided to volunteer with Dorset Macmillan Advocacy because I believe I have the skills to support people during difficult times.  When the coaching opportunity arose it felt like a very natural next step to use these skills so support people with long term health conditions.’

NHS Health Education England has a consultation open at the moment on a new volunteering strategy.  It is aimed at developing the future workforce and focuses on bringing young people into Health and Social care.  I think it’s a great idea and particularly like the emphasis on removing inequalities in volunteering but it did make me think of Tessa and how volunteering has been a way for her to kick-start a new career to which she brings her wealth of accumulated knowledge and experience. Tessa agreed, ‘I had no idea that volunteering would open up a new world for me.  I am enjoying the work immensely and I feel like it does make a difference.’

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy


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Statutory and voluntary sectors working together in Dorset

Katie Hunter, Dorset Cancer Partnership Cancer Services Coordinator at Dorset Clinical Commissioning Group has a wide remit which includes patient and public involvement.  Katie came to Help and Care at the invitation of Sue Newell, Wessex Voices Project Lead to meet Jo Lee and Kathleen Gillett the coordinators of Dorset Macmillan Advocacy having already met colleagues at Dorset Advocacy.

Katie explained Dorset Cancer Partnership’s plans for improving cancer services in the county and we went on to discuss how volunteer advocates and advocacy partners might be able to share their views.  Katie has already met with the chair of Dorset Macmillan Advocacy’s steering group, Cancer in Older People’s Development Group, and two peer volunteer advocates but will attend a future volunteer team meeting to hear more about why and how people affected by cancer are providing advocacy support and what they get out of it.

Kathleen and Jo suggested that volunteer advocates can often see immediate benefits of the help they are giving whereas taking action to improve cancer services can require a more long term view.  Katie will be able to ask the volunteers how they would like to participate in the newly developed local involvement opportunities.

L-R Katie Hunter, Jo Lee and Sue Newell

 


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Older people, family and public policy

Today’s guest blog is from Kirsty Woodard of Ageing Without Children:

The assumption that all older people have family is deeply embedded in our thinking, policy and delivery of care. Think of all the solutions to issues associated with ageing that start with “talk to older people and their families”. This is largely understandable; 92 per cent of unpaid care is carried out by family members; however there are already 1 million people over the age of 65 who have never been parents which will double to 2 million by 2030. Still more older people are estranged from their children, have been predeceased by them or have children in no position to support them for a variety of reasons. Add to this the growing number of older people who are single, widowed or divorced (the rate of divorce in people over 50 is rising faster than any other age group) and it is clear that an unprecedented demographic shift is taking place. More older people than ever before are living longer but are not and will not be in a position to rely on family support.

There is often an assumption that older people without children have developed good relationships with wider kin and have strong friendship networks that can step in and substitute for family. Unfortunately, the research to date shows that this only works when older people are healthy and need short term or one-off support. If or when people’s health deteriorates and care needs increase, these wider networks fall away just at the time they are needed most.

The reality of care for people without children

Unfortunately thinking and planning on care has not yet caught up with this reality. For example, 80 per cent of older people with disabilities are cared for by either their spouse or child yet the number of older people with disabilities who live alone and have no child is projected to increase rapidly, rising by nearly 80 per cent between 2007 and 2032. Evidence shows that people ageing without children receive less unpaid care than those with children and consequently are forced to rely on paid for care yet access to social care has never been so limited. People ageing without children are 25 per cent more likely to go into residential care but the residential care sector in the UK is in parlous state.  People without children are up to a third more likely to be carers for their own elderly parents but there is little focus on their specific needs as carers ageing knowing there is no adult child to support them.

As a society we must plan care around the population we have now and will in the future, not one from the past. Exhortations for families to do more not only belie the huge amount families are doing providing care and support but exclude those without.

So what can we do?

Firstly, we need to review our care services from the point of older people doing everything entirely without support from family. This includes everything from finding out information to getting their washing things in the event of unplanned hospital admission to creating a lasting power of attorney to arranging hospital discharge to searching for a care home. Only then can we see how much family support is required to make the system work and where we need to change things so it works for those without. Care services that work for people without family support will work far better for people who do have family too

Secondly, care services must make a greater effort to understand why so many more people are ageing without children and the issues that face them. It is not possible to design services that work if you do not understand the people you are designing them for. People ageing without children must be included in all co-production and planning on ageing as a matter of course.

Thirdly services must consider their use of language. Branding services with “grandparent/grans/grannies” unless they specifically mean only grandparents should use them exclude older people who are not and never will be grandparents.

Fourthly, people ageing without children should be supported to form groups both on and off line where they come together to form peer support networks. People ageing without children want to help themselves and each other.

Fifthly, the gap around advocacy must be addressed. People ageing without children have been very clear on their fears of an old age without a child to act as their intermediary and advocate in their dealings with care services particularly if they become incapacitated mentally or physically.

Finally, everyone, both people ageing without children and those who do have family, should be helped to plan for their later life.

People ageing without children must be brought into mainstream thinking on ageing. By working collectively we can as individuals, communities and wider society address the needs of older people without children or any family support. Only by working together can we care differently for people ageing without children.

The views expressed in this blog are those of the blog’s author alone and do not necessarily represent those of OPAAL (UK). OPAAL (UK) is not responsible for the accuracy of the information supplied in blogs by external contributors.

Kirsty Woodard, Ageing Without Children


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Recognising volunteers as part of the cancer care team

Research and technological advances mean that new cancer treatments are continually coming on stream. This is good to know given that the number of people living with a cancer diagnosis in the UK is set to double from more than 2 million in 2010 to 4 million by 2030. But what about the people who actually help those affected by cancer, doctors and nurses for example. How is the cancer workforce keeping up with change and preparing for the future?

In February of this year Thinking Differently Macmillan’s vision for the future cancer workforce in England was published. In the Foreword Dr Fran Woodard, Executive Director of Policy and Impact, states: ‘We believe that the workforce needs to be equipped with the capacity, confidence and skills to identify and address holistic needs, to tailor follow-up care and support people to self-manage.’

The current challenges facing the cancer workforce include:

  • rising demand for services and increasing complexity – e.g. people living with multiple long term conditions
  • poor coordination and communication leading to lack of support for recovery

Macmillan calls on Health Education England and the NHS at national, regional and local level to work strategically to ensure people living with cancer experience well-coordinated continuity of care: ‘Our vision is for a workforce that can deliver holistic, patient-centred care and support. It is based on understanding the needs of people living with cancer and the access they need to other services that will contribute to their care.’

The report explains that ‘Delivering truly patient-centred care means ensuring that people are supported before, during and after treatment… Without the right workforce in place, they … may not have the support they need to optimise their quality of life after treatment. They may not always know who to contact for support nor how best to do so. We know they do not always have enough time to talk through all their concerns or be supported with non-clinical issues, such as financial support.’

Macmillan recognises that ‘Volunteers and people affected by cancer, including carers, also have an important part to play in the cancer care team’. My personal view is that highly trained professionals can fail to see the full potential of volunteers.  Peer volunteer advocates are entirely patient or person-centred in their approach as the very nature of advocacy demands that it is led by the service user or advocacy partner as we prefer to call them.   Volunteer advocates specialise in finding things out, sourcing additional support and facilitating ways to access that support. Volunteer advocates have time to listen and to build a trusting relationship.  Volunteer advocates will not offer clinical support but they will help to ensure people can understand information that they are given and feel ready to make informed choices about treatment and care as well as exploring practical and financial support needs.

The report goes on to say ‘Encouraging retention of staff will also be hugely important, as will looking at the potential of retired professionals as volunteers.’ In Dorset we have proven that staff who reach retirement age can be retained in the workforce by the offer of challenging and rewarding volunteer roles such as providing independent advocacy support. Time our Gift to You includes the stories of several former health professionals. Mike Goodman, retired Clinical Nurse Specialist from Dorset Macmillan Advocacy rightly observes: ‘After many years as a health professional you do build up a wealth of expertise and numerous medical contacts which it seems a waste to suddenly abandon just because you retire.’

The Macmillan report recommends next steps and advises that ‘Solutions will be unique to each local context and will require the input of a variety of local stakeholders, including Cancer Alliances, Sustainability & Transformation Plans and local NHS providers.’  We are trying to help colleagues in statutory services in Dorset to understand what trained peer volunteer advocates can do and how they are contributing to the skill mix of the cancer care workforce for the benefit of people affected by cancer locally.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy, Help & Care


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Advocacy support is unfortunately still relatively unknown..

Today Kathleen Gillett of Dorset Macmillan Advocacy argues that advocacy support has a role to play in breaking the negative cycle of cancer care:

The Patients Association has chaired a working group on ‘Transforming the cycle of cancer care’.

The working group argues that ‘currently there is a negative cycle in cancer care, where a short-term approach leads to rising costs in cancer, makes fewer resources available, provides inadequate patient support which re-enforces the need for a short-term ‘just managing’ approach.’  It proposes ways to break the negative cycle.

To address this challenge, The Patients Association and Bristol-Myers Squibb are working alongside experts and patients from across the cancer space to identify new models of service delivery, showcase best practice, and provide real improvements in patient care.

The report discussion includes sections and recommendations on:
Identifying, incentivising and implementing best practice
Developing effective prevention strategies
Implementing best practice in the early diagnosis of cancer
Delivering timely access to treatment
Engaging patients in delivering innovative care pathways

To my mind the report blurs the issue of patient engagement and involvement in service improvement and that of individual patients who are ‘engaged’ and active in their own healthcare journey. Both are important and worthwhile while distinct from each other.

I think that the argument for ‘engaging patients in delivering innovative care pathways’ reads like a explanation of the benefits of independent advocacy support:

‘Educating patients with cancer about self-management and empowering them to play an active role in the decision-making process was considered to likely result in an improvement of patients’ knowledge, understanding of their condition, adherence to treatment and engagement in their healthcare. Whilst not all patients will want to play an active role in their treatment and care, it is important to provide patients with the opportunity and the choice to make their preferences clear and also tell us what a “good” treatment outcome looks like for them.

‘The Working Group described these users as “activated patients” who can lead the charge for the adoption of best practice care. According to Working Group attendees, the evidence suggests that “activated” and informed patients use an average of 20% fewer resources than less informed counterparts.’

Advocacy support is unfortunately still relatively unknown and it is not uncommon to read policy reports in both health and social care spheres that appear to describe it and recommend it without ever using the term. I believe that independent advocacy support and particularly that provided by peer volunteer advocates has a role to play in breaking the negative cycle of cancer care. It can certainly be preventative and facilitate timely access to treatment in addition to empowering patients. I would like to see it recognised as an integral part of the cancer care pathway, recognised as best practice and implemented nationally.

Kathleen Gillett, Coordinator Dorset Macmillan Advocacy