Older People Living with Cancer

Peer advocates supporting older people affected by cancer


Leave a comment

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

 

Advertisements


Leave a comment

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


1 Comment

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


Leave a comment

Advocacy services as part of the wider picture of patient involvement

The Dorset Macmillan Advocacy steering group (Cancer in Older People Development Group) met at Lewis Manning Hospice on a sunny day in Spring with the usual packed agenda.

A key discussion topic was how learning from the advocacy services can feed in to local service improvement. We noted how the team of peer advocates from Getting Heard in Oxfordshire had produced a report with suggestions which had been well received by the local Trust.

There were plenty of informed contributors:  Tracy Street, Macmillan Engagement Coordinator for Dorset attended to lead the discussion on user involvement (Tracy had been responsible for patient involvement at the Dorset Cancer Network);  Paula Bull who has joined the steering group has been a part of the Dorset Cancer Patient group for many years;  Lynn Cherrett, Lead Cancer Nurse at Poole Hospital is working closely with the new Dorset Cancer Partnership (DCP) (the local Cancer Alliance).  Together with the DCP chair Lynn is working to create a new Dorset Cancer Patient Experience Group.

Informal discussions after the meeting                                                                                                                   Front L to R Julie Cook, Acute Oncology Nurse, Dorset County Hospital, Rachael Brastock, Macmillan Psychological Support Lead, Genevieve Holmes, Macmillan Coordinator/ Senior Advocate for Dorset Macmillan Advocacy at Dorset Advocacy, Cait Allen, CEO Wessex Cancer Trust
Back L to R Graham Willetts and Charles Campion-Smith

It was agreed that the advocacy service will have a part to play in future local cancer service improvement. People affected by cancer (patients and carers) are steering the service, delivering the service and benefiting from the service.   They have unique insight into how people in Dorset are experiencing the current cancer care pathways which can be usefully added to the views of trained patient representatives.

Bob Smith, peer volunteer advocate and Paula Bull

The group also welcomed Cait Allen, Chief Executive of regional charity Wessex Cancer Trust as a guest. Cait gave an update on the development of services in Dorset including the Bournemouth Cancer Support Centre which offers drop in support.

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

 

 

 

 


Leave a comment

At the Staffordshire Dying Matters conference

Kath Curley of Cancer, Older People and Advocacy delivery partner Beth Johnson Foundation and Staffs & Wolves Cancer Advocacy and Support Project Manager shares a post recently published on their own project blog. She tells us about her attendance at a recent conference marking Dying Matters Week:

Dying Matters Week in Staffordshire was celebrated by a Palliative and End of Life Conference organised by University Hospitals of North Midlands on Thursday 11th  May. The Conference was entitled “I didn’t want that: Why patients’ wishes matter” and was attended by over 250 delegates from across the Midlands. BJF had a stand to promote the dementia and cancer advocacy projects and was therefore able to join the Conference.

The conference was packed

There were some eminent speakers including Dr Sara Russell, Head of Research and Clinical Innovation at Hospice UK, who showed a very thought provoking film from ZdoggMD; “Ain’t the way to die” which you can find here  

Sara’s message was that professionals should be asking “What matters to you?” rather than “What’s the matter with you?”

Amanda Cheesley, Professional Lead Long Term Conditions and End of Life Care with the Royal College of Nursing followed on and very much reiterated Sarah’s messages.  She opened by talking about the “essence” of the person – who we are, what we are – doesn’t go away when someone  dies or is dying. We should look at what is important to people emotionally, physically and spiritually.

 Jan Cooper, Regional Liaison Advisor at the General Medical Council discussed the End of Life/ Palliative Care Guidance. Decision making should be a partnership and this will require a change of culture. At one time professionals made the decisions, then it swung to patients making the decision but it should be co-production – joint decision after listening, discussing and sharing information.

 

After lunch there were two more “professionals “   presentations from Claire Henry – the Chief Executive Officer of the National Council for Palliative Care and Dr Katherine Bristowe , a post-doctoral  researcher at the Cicely Saunders Institute, Kings College, London. She has a particular interest in widening access to palliative care, and recently worked on the ACCESSCare project (funded by Marie Curie), a national qualitative interview study of LGBT people facing advanced illness and bereavement.

At this Conference the best was most definitely left until the end. The Conference closed with a presentation from Tommy Whitelaw, Project Engagement Lead for Dementia Carer Voices. He was a carer for his late mother Joan for 5 years as she had vascular dementia. He told us about his beautiful mother, Joan Whitelaw, NOT the disruptive lady in bed 6! He talked about his experiences with health professionals during his time as  a carer and the importance of reassuring carers that they are doing a wonderful job. 

Tommy travels across Scotland to raise awareness of the impact of dementia on families and the importance of empowering carers to carry out their difficult but vital role. Lessons to be learnt for people caring for someone with any terminal condition. There was not a dry eye in the Conference!     

Joe Potts, Macmillan End of Life Care Facilitator, University Hospitals of North Midlands  is to be congratulated on a stimulating, thought provoking conference – a job really well done. 

Kath Curley, Staffs & Wolves Cancer Advocacy and Support Project Manager


Leave a comment

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


1 Comment

The transition from professional to volunteer which brings a wealth of expertise

The volunteers who have shared their stories in Time: Our Gift to You come from all walks of life but I felt it was significant that several were retired Health or Social Care Professionals.   I wanted to know more about what motivates them to train as an advocate so I asked Mike Goodman, a newly retired Clinical Nurse Specialist who joined Dorset Macmillan Advocacy last year, why he volunteers and what he feels former Health Professionals in particular can bring to the role. Kathleen Gillett, Coordinator, Dorset Macmillan Advocacy

‘I was interested in becoming an advocate because, despite being retired, I still have an interest in helping people live with and recover from a diagnosis of cancer. 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 transition from professional to volunteer is a tricky one and it can be rather easy to slip back into a formal or professional approach to a situation rather than acting and speaking as a lay person – or simply imagining being the patient. However empathetic professionals think they are, because they have been trained/educated and because they are busy they quickly slip into “professional” mode and forget just what it is like being a confused, slightly scared, often lonely recipient of health care services.

Mike Goodman

I am sure advocates can be effective whether they have been cancer patients themselves, or have been the carer of someone with cancer or have been health care professionals. All those experiences will enable you to be a help and support. They would all bring different skills and abilities to the many and varied problems that the cancer partner is grappling with. Probably the greatest skill lies with the Macmillan Senior Advocate or Volunteer Coordinator in choosing which advocate to link up with each new partner.

Health Care professionals do have the ability to understand how the wheels turn in a hospital department or what a GP really needs to know in order to change the experience for a patient who is in a crisis. They will understand that it is hard to get something done on a Friday afternoon when most departments in a hospital are winding down for the weekend or that a referral between teams will have to go through an MDT meeting before a decision is made. Explaining that there is no simple blood test or screening process for some cancers comes as a shock to some people in the community who are reading the tabloids and grasping at every tiny news item that has the word cancer in its headline.

Retired professionals can play an important role in advocacy but, at the end of the day, it is that human touch, that word of encouragement, that listening ear that every person affected by cancer needs and wants and that is a role that every advocate seeks to fulfil.’

Mike Goodman, retired CNS.

Our thanks to Mike for sharing his thoughts.