Older People Living with Cancer

Peer advocates supporting older people affected by cancer


Leave a comment

I will be able to concentrate on getting well…

With Carers Week underway we thought it might be useful not only to acknowledge and appreciate the support carers provide but also to recognise that sometimes its the carer themselves who get a diagnosis of cancer.

Caring responsibilities can be exhausting enough but imagine the additional strain of a new diagnosis. That’s exactly what happened to John and I recount his story from our Every Step of the Way publication here:

“My name is John. I was born in 1953. I live with my wife who is the same age as me, in fact, we are only a month apart in age. We live in a suburb of a town. I have been a carer to my wife since she had a stroke when she was in her 30’s. That was a terrible thing to happen to someone so young. It left her unable to read or write and her speech is very difficult to understand.

At the beginning of September of 2013 I was diagnosed with cancer of the oesophagus. For the next few weeks I didn’t receive any prognosis or treatment for this condition. I was told that I would be told what was wrong with
me at an appointment with the Consultant due in mid-October at the hospital.

I went to that appointment with my wife. I was told that I had a terminal cancer of the throat. I went quite numb. However, my wife wasn’t convinced. She had been a nurse and some of the things that were being said to me were not quite ringing true with her. She tried to explain her feeling to the nurse on reception but she just turned her eyes up. My wife noticed that there were 2 appointments for Smith on the same day.

I was very upset by the news and couldn’t think straight. My wife was doing the best she could but her own problems were not helping her. One day the Stroke Association home visitor called. She told us about the cancer advocacy
service and said that she would make a referral to them. This she did. In the meantime the Doctors did realise that they had told me some of the wrong information. I am not clear how this happened. However, my prognosis had
changed and they were now saying that my cancer was not necessarily terminal.

Richard called to see me quite soon after that. He was an advocate. I explained my position to him. I told him that I suffered from asbestosis and emphysema and that the Doctors were saying that an operation may not be possible
as the Doctors were concerned about the effects that an anaesthetic may have on my lungs and kidneys.
I told Richard all about my problems and those of my wife. I was feeling a little better about things as now there was a ray of hope. I had another appointment coming up and would contact Richard after I had been seen.

I went to see the consultant again in November. They said that I could go into hospital for an operation. I am now in the hospital, but, unfortunately, the site of the operation has become infected and it looks like I will be here for some time.

My wife does visit me but it’s a very difficult journey for her as it’s a long way to go. She does drive but doesn’t find it easy. We have a great deal of problem with communication because I have had a tracheostomy.
I didn’t manage to get around to telling Richard that I was going into hospital before I went. I had told him that I would let him know what was happening but things moved very quickly and I didn’t get back to him.

Peer advocate Richard

My wife has found it increasingly difficult to deal with things at home. She seems to be getting letters from the hospital that didn’t make any sense. This was particularly difficult due to her communication problems. She can’t pick up the phone and easily have a conversation with someone. She began to wonder if they were still mixing me up with someone else. She has also had letters from the benefits department asking me to make an appointment to see if I am still eligible for benefits. She can’t deal with this at all.

However, the good news is that Richard had been made aware of my current position. He has contacted my wife and is going to go and see her this week and help her sort things out. That will be a great weight off my mind. I will be able to concentrate on getting well and not worrying about her and what’s going on at home.

The help from the cancer advocacy service is for people ‘affected’ by cancer and not just those that have it. Richard’s input is of great help. He understands my wife’s condition and makes allowances for her communication problems.
I don’t know how long I will be in hospital but I am very reassured that Richard is going to help at home.”

Marie McWilliams, OPAAL


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

‘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.

logo

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.


Leave a comment

“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. 

Untitled

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


Leave a comment

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.

Untitled

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.

Untitled

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:

Untitled

Kath Curley, Project Manager

 


Leave a comment

‘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.’

MDA logo

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


Leave a comment

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