Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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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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Clinicians and Patients: Balancing the Conversation

Today Jen Rimmer, advocate from Dorset Macmillan Advocacy and Dorset Advocacy, looks at the barriers to patients being more involved in decisions affecting their care:

BBC Radio 4’s Inside Health (listen here: http://www.bbc.co.uk/programmes/b07vs2p0) reported on NHS Wales’ new initiative ‘Choosing Wisely’ which is attempting to challenge the general atmosphere that doctors know best and encourage patients to engage more actively in the decision making process around their tests and treatments.

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Dr Paul Myers, Chair of the Academy of Medical Royal Colleges in Wales who is leading the new initiative was interviewed on the programme. He explained that the NHS is, “often too quick to offer patients treatments and interventions that don’t always benefit them and may even harm them…up to 10% of interventions in healthcare are inappropriate and perhaps even harmful”

To tackle this, patients are being encouraged to ask 4 key questions of their clinicians:

  • What are my options?
  • How likely is the treatment to benefit or harm me?
  • Do I really need it?
  • What can I do to help myself?

In tandem there is work going on to ensure that the clinicians are more receptive to patient questioning in an NHS culture dominated by time constraints and clinical decision making processes increasingly driven by guidelines and protocols.

Dr Myers describes findings that patients, “continually express that they’d like to be more involved in the decisions made about them” but at the same time many patients state that they have difficulties having conversations with their clinicians.

The Choosing Wisely initiative acknowledges that failing to understand patients’ needs and wants often leads to high levels of patient dissatisfaction and that spending time in the initial consultation listening and identifying the concerns, values and preferences of the patient pays dividends later down the line.

But what are the barriers to achieving this and how can these be addressed? Well for those of us who already work in healthcare advocacy, one useful strategy is clear!

Dr Margaret McCartney, a regular contributor to Inside Health, highlights some of the issues – time constraints in appointments and the problem in assuming that every patient is able to take in and process the information given to them in such a way as to reach an informed decision.

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Jen Rimmer

As advocates, we see this all the time. Ensuring that a person with a known cognitive impairment or learning disability is supported to digest information and come to the decision that is right for them is a given but we also see usually assertive and self-advocating individuals floored in the face of important and stressful medical decision making processes. This can be due to the emotional and psychological shock they are feeling or simply being unfamiliar with the medical domain. Advocates have both the time and the skill to support patients to make decisions and, as we have seen here in Dorset, both cancer patients and clinicians report positive outcomes as a result of Independent Advocacy involvement before, after and at appointments.

It is great to see initiatives such as ‘Choosing Wisely’ and similar programmes are set to roll out across the UK later in 2016 but if the NHS fail to consider how Independent Advocacy could support this, they might be missing a trick!

Jen Rimmer, advocate, Dorset Advocacy & Dorset Macmillan Advocacy


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Patient experience can improve the lung cancer pathway

Today Kathleen Gillett of Dorset Macmillan Advocacy tells us about an online survey on what matters most for people affected by lung cancer and their carers:

People can use their experiences of health and social care, good or bad, to help make things better for others in the future. In health this is called ‘patient experience’ and the patient point of view is often sought through ‘patient engagement’ methods such as events or surveys.  Patient groups and voluntary organisations sometimes call this ‘user involvement’.  I’m still getting to grips with these concepts and it helps my understanding to try to explain them in plain English.

A national survey of cancer patients takes place every year called the National Cancer Patient Experience Survey and the latest survey should be published in the next couple of months.  It contains useful data right down to individual local hospital Trust level.

There is currently a survey open specifically for lung cancer patients and carers (as well as a version for Health Professionals).  The survey is being carried out by the UK Lung Cancer Coalition (UKLCC) which is a coalition of the UK’s leading lung cancer experts, senior NHS professionals, charities and healthcare companies.

Established in November 2005 to help to bring lung cancer out of the political, clinical and media shadow the organisation’s long-term vision is to double one year lung cancer survival by 2015 and five year survival by 2020. The ambition is underpinned by four key objectives including; to empower patients to take an active part in their care.

The report of the previous UKLCC survey which took place in 2013 Putting patients first: Understanding what matters most to lung cancer patients and carers will serve as a baseline to compare with the results of the new survey as many of the questions are similar.  The Foreword to that report said the survey had ‘highlighted the need to promote and embed a more patient-centred approach to lung cancer care.

At Dorset Macmillan Advocacy we are looking at how we might better support people affected by lung cancer.  We are talking to colleagues in the Health service about providing advocacy support to patients with suspected lung cancer to enable them to access the many important tests that they need as quickly as possible.  These tests may take place at different locations and there might be several in the space of a week.

We were recently able to provide an advocate at quite short notice to accompany a person to a scan. The time spent waiting for the scan was usefully spent uncovering concerns and preparing questions so that at the consultation which followed the person was able to be proactive.  We received very good feedback about the effectiveness of the volunteer’s support at this appointment from the patient, the consultant and the patient’s GP.

As an advocacy service we can amplify the voices of the people we have supported to date who are affected by lung cancer by asking if they would like our help to take part in the new survey (it is available online and can be downloaded as a paper document).  We can also ask local Clinical Nurse Specialists for Lung cancer if they are completing the survey and let them know that if they have patients (or carers) who would like to take part in the survey but need help to do so then we may be able to offer support.

The survey is available via the pink coloured bar on the right of the UKLCC home page and the closing date is 27 June 2016.

Kathleen Gillett, Dorset Macmillan Advocacy

 

 


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New Macmillan project in North Staffordshire

In this post Kath Curley from programme partner Beth Johnson Foundation introduces us to new work going on in her local area:

I am pleased to be able to write about a new Macmillan funded project that is taking place in Staffordshire.

The Project is led by a familiar face to the Staffs and Wolves Cancer Advocacy and Support Project – Jo Coulson –  and Angie Bunn has taken up the role of Engagement Officer.

Jo

Cancer support services are perceived to be patchy or even inaccessible when the person affected by cancer is also Lesbian, Gay, Bi-sexual and Transgender (LGBT). There is a lack of solid evidence in relation to this area of need and an absence of information regarding effective approaches to service provision. With a view to improving this situation this project seeks to redress this by speaking directly to people from these groups and undertaking an in-depth assessment of current service “fit”. Recommendations will be made for service redesign based on the experiences recorded across Staffordshire, including Stoke on Trent. It is expected that the recommendations made will influence services nationally and may form the basis of a much broader review of services.

Jo

Jo Coulson

Scoping aims are to find out:

  • What are LGBT people’s experiences of cancer treatment and support locally?
  • What factors facilitate/inhibit open discussions between clinicians and LGBT patients?
  • How well educated are local health professionals about LGBT issues (both clinical and personal – do doctors make assumptions)?
  • What are awareness levels within LGBT communities about specific cancer risks, screening programmes, etc?
  • Is there a need for specialised LGBT code of practice, cancer information and literature, etc?
  • Can true ‘patient centred care’ disregard sexuality or gender variance?

It will use the following strategies:

  • Face-to-face meetings & capturing stories
  • Surveys and questionnaires
  • Focus groups, workshops, roadshows
  • Internet and social media
  • Workplace engagement with clinical staff
  • Information gathering and capturing experiences, identifying trends and gaps
  • User involvement in project development                                                                                                                                                                                                                                                                                  

 We wish Jo and Angie all the best with this Project and look forward to the outcomes. I will try to keep you all up-to-date as the Project progresses.

Kath Curley, Staffs & Wolves Cancer Advocacy Project Manager