Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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‘I don’t know where to start’

Kathleen Gillett of Dorset Macmillan Advocacy looks at the plight of older carers:

We are currently supporting a lady in her late 70s who has a long term health condition and was until only a few weeks ago cared for by her husband.  A sudden deterioration in his health owing to a progression in his cancer has turned the situation upside down and she is now his carer.  With no family in the local area she must alone cope with taking care of things at home that were formerly his domain and at the same time communicating with many professionals with unfamiliar job titles.  No wonder she felt anxious and said ‘I don’t know where to start.’

There have been many reports about the needs of carers over the years.  The importance of supporting carers is widely recognised but until now there has not been a lot of detail about older carers.  Carers Trust have published Caring About Older Carers: Providing Support for People Caring Later in Life which is a toolkit aimed at commissioners of health and social care in England to highlight the needs of carers over the age of 60.

The statistics are compelling. The number of older carers is increasing at a greater rate than for carers as a whole.  Three in five of carers aged over 85 are male and most carers over 80 spend more than 50 hours a week caring.  Carer’s health deteriorates incrementally with increased hours of caring.  Older carers are more likely to have age related illness themselves – two thirds of older carers have long term health problems. One third of older carers have cancelled treatment they needed due to their caring responsibilities.

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Carers of all ages deserve recognition and support. Older carers need the support perhaps more than anyone.  From a financial perspective research has shown that carer breakdown is often a factor in emergency hospital admissions and admission to residential care.

The toolkit chapters identify areas of need for older carers including health and wellbeing; financial concerns; social isolation; concerns for the future; information and advice; assessment, support planning and involvement and finally bereavement and life after caring. Examples of tried and tested practice are given with each of the chapters and particular mention is made of the role of advocacy services in representing and supporting carers with assessment, support planning and involvement.

We were able support the lady at an appointment with the hospital’s palliative care coordinator. Then we accompanied her to view a nursing home where her husband could be admitted to receive the palliative care he needs. She was able to make preparations and the following week her husband’s planned discharge from hospital took place.  The nursing home location is easier for visits and there are no restrictions on visiting hours and the possibility of overnight stays for family members.

Older carers struggle to remember their own needs and to look after themselves.  The support and encouragement that peer volunteer advocates can bring to older carers affected by cancer can make a huge difference to them.


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“Knowing there is someone out there I can call and help me when it all gets a bit much is priceless, truly and utterly priceless..”

Today we hear from Alan (not his real name) who has been receiving peer advocacy support from delivery partner Age Connects Cardiff & the Vale

I am a 76 year old gentleman who has recently started receiving support from the Cancer Older People and Advocacy project. To say I was in a bit of a state is an understatement.  Sadly my wife passed away in December from a brain tumour, to which we knew nothing about.  My wife and I were also carers for our grandson who had learning difficulties and he also had cancer, sadly he too passed away very suddenly in March.  My life has in a matter of months, been turned upside down and ripped apart.  I have limited family that live close by, so I’ve been struggling with how to cope and deal with the day to day issues of life.  I am also awaiting an operation myself for a knee and hip replacement and am in a great deal of pain.

HANDSMy Social Worker was the one who learnt about the Cancer, Advocacy and Older People’s Project and suggested we ask for some support.  I was reluctant at first as it meant explaining my pain to someone all over again, but I knew I really needed help and my Social Worker, however lovely she was, had very limited time.  I met a really nice gentleman from the Cancer Older People and Advocacy team who was a volunteer.  He was able to assist me with the mountain of paperwork I had accumulated, as this was really getting on top of me and the debt letters were beginning to come in.  He also assisted me with the practical things such as where and who I could donate my wife and grandson’s belongings.  He was someone to chat to also, someone independent who didn’t judge, he just listened and understood my pain. 

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He also accompanied me to hospital appointments about my own health which was hugely supportive.  After being a carer for so many years, all of a sudden being alone is a huge shock and adjustment. 

I continue to receive support as I still have a mountainous pile of paperwork, again! But knowing there is someone out there I can call and help me when it all gets a bit much is priceless, truly and utterly priceless.

If you know someone who might benefit from peer advocacy support why not check out if we’re delivering services in your area by clicking here. Do get in touch.

Angela Jones, Age Connects Cardiff & the Vale


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It’s Carers Week

Whilst it’s still Volunteers Week it’s also Carers Week from 6th to 12th June. Kath Curley of programme partner Beth Johnson Foundation looks at at the statistics around the service the Staffordshire and Wolverhampton Cancer Advocacy and Support Project provides.

Since the start of the Project there have been 432 referrals into the advocacy and support service,  with 95 (22%)  being for carers. Of these 29 (30.5%) are male and 66 ( 69.5%) female – a ratio of   more than 2:1 of female to male. Currently there are 11 open cases for carers across Staffordshire and Wolverhampton.   Looking at the 84 closed cases throws up some interesting statistics.

The majority of referrals were “self-referrals”  – 36% followed by referrals from the Macmillan Cancer Information and Support Centres in Stoke, Stafford, Burton and Wolverhampton which were 22 around 23%. Referrals to the Advocacy Service for clients with cancer resulted in 8 referrals for their carers and friends and family of cancer patients led to a further 7 referrals. Macmillan nationally (helpline) have only referred 1 carer to the Project.

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84 cases have been closed over the period of the Project of which 39 were closed as the “course of action was completed” which is 46%.  Unfortunately only 6 were closed because they felt empowered to act for themselves, make decisions or had regained control. One carer was too ill and there was no engagement with 9. Other reasons were moving out of area, no longer needing the service, bereavement and refusing the service.

Of the 95 cases, the majority live in North Staffordshire (including Stoke on Trent), this is not surprising as the Project was started as a pilot in this area back in 2012. Wolverhampton has only had 5 referrals but this was the last area to come on board as part of the Project in February 2015.

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The project is for older people (50+) affected by cancer so if you are a carer of someone with a cancer diagnosis, live in Staffordshire or Wolverhampton and are struggling then please get in touch with us. A phone call to Beth Johnson Foundation on 01782 844036 is all you need to do.

Remember:

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Kath Curley, Project Manager

 


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‘Health literacy’ and ‘Patient activation’

Kathleen Gillett from programme partner Dorset Macmillan Advocacy writes in the first of two posts about how our peer advocates can support older people affected by cancer achieve voice, choice and control in their cancer journey:

I recently read the terms ‘health literacy’ and ‘patient activation’ in a report by Macmillan Cancer Support and found them useful labels for ideas that had been floating about in my head. 

Let’s talk about it: Improving information and support describes the role of health literacy and patient activation in a chapter on Improved Communication.

‘Poor reading and comprehension skills are not always taken into account when providing accessible information and support, with serious implications for health inequalities and outcomes. While the problem of functional literacy remains a huge challenge, it is possible to be fully literate and yet health illiterate. Health literacy concerns the ability to read, understand and act on health information, as well as navigate the health and social care system.’

Practically, low health literacy can impact on patients in a number of ways. These include their ability to follow treatment plans, seek support, participate in consultations, understand performance data, understand the implications of provided information, and communicate their own values and needs. Individuals vary in their level of patient activation – the measure of a person’s skills, confidence and knowledge to manage their own health.’

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It helps me to relate theory to practice and I thought of two people that we supported in the early days of Dorset Macmillan Advocacy.

The first advocacy partner described herself as having been ‘a poor scholar’. She disliked written information and kept hospital paperwork out of sight. You could say her level of general literacy was low.  Her health literacy or her ability to understand her condition, her treatment plan and its implications risked being affected by her general literacy.  She knew that verbal processing of information through discussion worked much better for her.  She had been able to ask a health professional for a translation into plain English ‘Does that mean…?’  With her advocate she was able to discuss her condition and the implication of treatment options at several key stages of her journey. She said that having an advocate also boosted her confidence.

The second advocacy partner sought to increase his level of health literacy. He undertook extensive internet research into his condition and travelled to see a specialist.  He also had a very strong level of patient activation.  In other words he was strongly motivated to be actively involved in clinical treatment decisions and make lifestyle changes that he judged to be beneficial to his situation.  However his responsibilities as a carer presented a physical barrier that also put him under huge emotional strain.  His advocate worked with him to put arrangements in place that permitted him to move forward with his own treatment.

The two people described had different cancers, different personal circumstances and different personalities but both benefited from advocacy support which is always tailored to each individual’s needs and situation.

Kathleen Gillett, Dorset Macmillan Advocacy


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Cancer, Older People and Advocacy on film

The first of our Cancer, Older People and Advocacy films provides a strong introduction to the Cancer, Older People and Advocacy programme. It’s a short film intended to give a flavour of the programme, demonstrating the difference independent advocacy makes for older people affected by cancer.

This film also brings a focus to the support we offer to older people affected by cancer who don’t have cancer themselves. It features Mike Pochin from Dorset Advocacy talking about the emotional pressures that carers feel, the role peer advocates can play in being a listening ear for carers and helping give clarity about the help they feel they need and the additional services that they might access to get that support.

This film features older people affected by cancer, and volunteer peer advocates talking about the need for independent advocacy, the benefits having the support of an advocate can bring for any older person affected by cancer and encourages you to find out more about our programme:

We’ll be back tomorrow with a film aimed at encouraging new volunteer peer advocates to join us.

Ang Broadbridge, OPAAL


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The negative spiral of ‘just coping’

Jen Rimmer tells us about Dorset Macmillan Advocacy’s additional focus on carers of older people affected by cancer:

Supporting carers has become an integral part of the Dorset Macmillan Advocacy Project and we have secured funding from the local Clinical Commissioning Group to do just that. As a result of this we have been able to welcome experienced advocate Pauline Godwin to the team.

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What we are often finding when we meet a carer referred to the service is that even if the older person affected by cancer themselves is coping well with the support mechanisms that are in place for them, the carer may be struggling.

 

Finding yourself in the caring role can be a sudden and unexpected change in circumstances and along with the shift this may cause in a relationship, there are inevitably practical issues that demand attention. Navigating your way through unfamiliar territory can be daunting at the best of times but when you are tired and emotionally affected by what is happening, the task can seem unmanageable. Carers and their cared for person are often caught in a negative spiral of ‘just coping’ and not having the time or energy to understand what help and support may be available for them.

Pauline Goodwin

Pauline Goodwin

Gwyneth Brooks the Carers caseworker at Dorset County Hospital came to meet Dorset Macmillan Advocacy volunteers in June and deliver some training on supporting carers in Dorset.

Gwyneth highlighted that the framework for carer’s assessments has recently changed with the implementation of the Care Act to a nationally standardised system and Social Services now have a duty of care to inform carers of services available to them. Locally, we are fortunate that Dorset County Council have opted not to charge carers for the services available to them. Examples of carer’s services include a sitting service and the short break service.

Previously the assessment of carers was based upon the number of hours a person was caring per week. Under the new system a carer is assessed according to the impact the caring role has upon their lives.  This means that the eligibility criteria is now lower (i.e. a grown up child living apart from their parent but having a caring role will be more likely to be eligible now) but the impact must be evidenced.

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This is achieved using the Carer’s Assessment form which can be filled out by a health or social care professional or the carer can fill it out themselves. There is clearly an opportunity for us as advocates to help the carer complete this assessment in in the manner which will best reflect their needs and experience. The rationale behind the new form is that the assessment is based on finding solutions to an individual carer’s needs rather than simply allocating services. Carers should also be registered with their GP as such to ensure they receive the help and support they need for their own health needs.

We are engaging with carers regularly as part of the advocacy support for individuals but we are pleased to be able to offer a service that carers can access directly themselves.

Jen Rimmer, Dorset Macmillan Advocacy


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‘Think carer!’ says Pat Vinycomb

Pat Vinycomb, Local Ambassador for Dorset of Carers UK, spoke at the recent Carers Meeting at Royal Bournemouth Hospital.  The meeting was organised by the Patient Engagement Team and coincided with the launch of pages for carers on the Trust’s website.

Pat’s keynote address ‘Think Carer: Supporting Carers in a hospital environment’ invited the carers present to reflect on when it was that they realised that they had become a carer and the feelings associated with the realisation that life would never be the same again.  In the hospital environment, said Pat, carers should be recognised for their skills and knowledge, feel valued, have the right information and advice and the choice to say no.  She outlined the challenges facing carers who need to understand what has happened and where to go for further help and advice.  She also explained the anxieties that carers may feel: ‘Can I ask staff a question and/ or challenge?’.

It was clear that Pat spoke from her own experience as she described a tendency for carers to feel they must hide their emotions and the inner conflict they can feel.  She emphasised to the nursing staff present that little things really do mean a lot to carers: somewhere to be private, comfortable seating, refreshments, as well as kindness, empathy and hope.  Above all good communication from hospital staff and being kept up to date is important for carers.

L-R Pat Vinycomb, Ambassador - Carers UK and Marion Summers, volunteer advocate - Dorset Macmillan Advocacy

L-R Pat Vinycomb, Ambassador – Carers UK and Marion Summers, volunteer advocate – Dorset Macmillan Advocacy

Pat’s presentation finished with a summary of the many types of practical help and support available to carers in Dorset, Bournemouth and Poole and she urged carers to remember that their own health matters. The carers then took part in facilitated discussions to generate feedback for the engagement team.

Later I talked with Pat and with our volunteer advocate Marion Summers (also a carer) about the support that Dorset Macmillan Advocacy can provide to carers.  Carers can be empowered by advocacy support to know their rights and feel more in control.  I was grateful to the Patient Engagement Team to be invited to the meeting and to be able to provide an information stand.  After Pat’s talk I personally had a much better insight into the challenges facing carers when the person they care for is staying in hospital and we hope to involve Pat in our volunteer training in future.

During national Carers Week from 8 June Jo Lee, Senior Macmillan Advocate at Help and Care, and other Dorset Macmillan Advocacy staff attended a number of events to raise awareness of our service among carers.  The Carers Week campaign this year focused on Carer Friendly Communities and produced this useful Checklist tool for carers which includes a section on Health: Carers Week 2015 Checklist.

Kathleen Gillett, Dorset Macmillan Advocacy