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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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

The complex interplay of practical, physical and mental factors affecting patient experience

Today Kathleen Gillett of Dorset Macmillan Advocacy considers the barriers preventing older people affected by cancer accessing the help they need:

We explore the physical, emotional and attitudinal barriers that older people may face to speaking up for themselves in a case study about ‘Stan’ during our volunteer induction.  In the case study Stan is given his cancer diagnosis and goes home alone without being offered any further sources of support or information.   Stan’s story is part of the OPAAL Cancer, Older People and Advocacy national training pack for peer volunteer advocates.  Stan is an archetype but in considering his story we put ourselves in the shoes of an older person facing cancer alone.At our most recent meeting for practising advocates we also considered a case study, this time a real one.  Jo Lee, Senior Advocate and Coordinator, outlined the situation of advocacy partner ‘Kevin’. Kevin had got in touch with Dorset Macmillan Advocacy himself after seeing a Macmillan TV advert and then searching the internet for local support. Jo gave a brief overview of Kevin’s medical history, the advocacy issues that he identified at the first assessment and the issues that subsequently presented or were identified by her during that assessment.

A discussion ensued about potential courses of action and then Jo explained what had actually happened.  The ethos of our service meant we were guided by the wishes of the advocacy partner at all times. There was a successful outcome in our having swiftly obtaining a grant and arranging the electrical upgrade and shower installation.  There remained other ongoing and unresolved issues.  At this point Jo ‘unmasked’ the volunteer advocate who was partnered with Kevin and we were able to question him more deeply.

Flip chart images from training

Why had Kevin become disengaged from his healthcare team and been missing his outpatient appointments?

Kevin had longstanding depression, he lived alone with no family in the UK.  He was no longer employed owing to an alcohol problem which might have been linked to pressure at work. His lifestyle meant that he would often watch TV all night and sleep most of the day. Effects of surgery meant that it was extremely difficult for him to make himself understood on the telephone. Fatigue was affecting his mobility and he found public transport to attend appointments very inconvenient. His nutrition was not as good as it could be and he had continuing pain.

The outpatient appointments that Kevin was sent were invariably early in the morning.  Kevin had his letters well organised in a file and knew when the appointments were but did not get up in time to go.  Kevin was in contact with his GP surgery but always seemed to be seen by a different doctor so did not experience any continuity in his primary care.

So we discovered a complex interplay of practical, physical and mental factors affecting Kevin’s ‘patient experience’ and his ability to benefit from the healthcare on offer.

Kevin and his advocate enjoyed an afternoon visit to the seaside once the initial issues were resolved.  It was a rare outing from the flat that was not about medical appointments for Kevin and an opportunity to get to know Kevin as a person for his advocate. The partnership continues and steps are being taken to investigate Kevin’s ongoing pain issues.

Health professionals are dependent upon patients engaging with them.  The barriers to engagement that patients have will sometimes be outside of the scope of their role. Kevin’s advocate has worked with him to resolve the issue that was concerning him most, has coordinated his care in and outside hospital and paved the way for him to reengage with his healthcare team.

Kathleen Gillett, Dorset Macmillan Advocacy

Peter’s story, part 2

Last September, Helen Vernon, advocate from Sefton Pensioners’ Advocacy Centre, wrote a blog post telling us about Peter (not his real name). Helen provided Peter with the advocacy support that meant so much to him. You can find the first part of Peter’s story here. Today, we find out what happened next…

When I first met Peter, he told me he had terminal lung cancer and he had 12 months to live.  He contacted us because there were some issues with his accommodation and he wanted to resolve them with the housing association rather than waste his time moving, as mentioned in my earlier blog post.   He was very happy with the advocacy support and so a few months later when he was having health problems he contacted me again. 

Peter asked me to accompany him to an appointment, which I agreed to do.  Unfortunately, his health deteriorated suddenly after Christmas and the planned surgery was cancelled.   He obviously felt a sense that he needed to put things in order so he asked me to write a will for him.  As an individual can write his or her own will, it was agreed within the team that I could do this for him.  I explained to Peter that I was not giving legal advice but simply documenting his wishes and having them witnessed.  In fact, there was very little to leave and it will be used to pay for his funeral.

Peter was admitted to hospital then a hospice, discharged home and readmitted.  At each visit, I could see he was becoming frailer.  One of his relatives lived abroad and I kept her up to date with his condition at his request.  Before the final admission to the hospice, he spoke to me about wishing to go to a nursing home, as it was important to him to have his own television in the room and he felt the hospice was a dark place.  I agreed to visit him after the weekend and prior to this visit, I researched the availability of nursing beds in the area.  I arrived at the hospice and spoke to the nurse about his condition.  She told me to be prepared as Peter was not in the same condition as when I had seen him on the Friday.  She was right, he had deteriorated even further and his usual spark had faded.   

Over the past three years I have worked with lots of service users who have been given this diagnosis and sadly, I have closed several cases because the person has passed away.  However, for one reason or another this has been the first time I have had cause to visit someone in his or her final days in the hospice. Perhaps because this gentleman’s family all live abroad and so he did not have the same support networks, it was even more important that advocacy was there for him.  I spoke to the nursing staff earlier this week and his relative was on her way to be with him.

He once told me “advocacy gave me a lot of hope that things would improve and they did improve” and “advocacy kept me going”.  I hope in many small ways we have helped him along his journey.

Peter’s niece called me this morning to tell me that he sadly passed away on Saturday morning with his family at his side.

Helen Vernon, Sefton Pensioners’ Advocacy Centre

(Our thanks to Helen for this moving account of Peter’s end of life story and the obvious impact on Helen herself,  Marie, OPAAL)

Gay and ageing – breastfallen

Today we’re delighted to reproduce a personal blog post by Roger Newman, a great friend and supporter of OPAAL. It was first published yesterday on Roger’s own blog site:

CHAPTER 1

You know how it is when you’re sitting in the beautifully warm sunshine of an Atlantic island, and at the end of December too! Your mind plays its usual tricks and your past, present and future all move around your brain inconsequentionally.  People, seemingly long forgotten, suddenly appear; events nag their way into the memory producing a cocktail of smiles, feelings of sadness and guilt; and coupled with it all is that priceless feeling of well being . The sun’s rays do their trick and you feel so relaxed as you smooth your body blending together its mixture of sun tan oil and sweat. It has been like that for 10 years now and I happily tell myself that I am lucky, so, so lucky to be here on the island, and may it always be so.

This afternoon as I  rub my chest and gently tweek my nipples, on my right side I feel something unusual. Just a small piece of a flower blown off a shrub by the wind, no doubt. I  close my eyes and continue with the serendipity. A minute goes by and I brush myself but feel it again. It is different, and this time, there is no doubt – it is real. There it is, beneath my right nipple, something distinct, hard and not moving.

I remembered the same feeling on a November day some 18 years before. I had been listening to a radio programme broadcast during breast cancer awareness week. ‘Men get it too’ the announcer said. I felt myself then, and sure enough, there it was, a small lump. Panic! Total fear! But actually, after diagnosis, all was well. It was a fatty lump and was removed, and I never heard about it again afterwards. This time, however, there was something different about it.

CHAPTER 2

On return home a visit to a consultant was arranged. He examined me and told me that he felt it could simply be the residue of my body’s reaction to some medication I was taking, but it was best to do some tests.

From now on my experience of diagnosis took me into a new world, and I had to get used to the fact that it was a  world which was not a man’s world. As a gay man I had not previously felt what might be called a typical heterosexual gender divide, it had not previously been an issue but now, to my surprise, it did. Even the language I used about my body took on  what I would have called a feminine aspect. What I had called my ‘chest’ now was called my ‘breast’. In the body imaging department I felt curiously out of place as I waited for my mammogram. The nurse taking the image clearly wasn’t experienced enough to cope either and she had difficulty suitably arranging a man’s body, whose nipples may have been slightly out of the ordinary, but whose breast hardly fitted a machine which was normally used to photographing something much more pendulous and flexible.

The resulting mammogram was insufficient and an ultra sound was called for, but that didn’t show much either, and a biopsy was next on the list. So with just a few bodily bits missing I prepared for another visit to the consultant. There we sat, my partner and me, two men, in a waiting room of women – a brave new world.

In he came, accompanied by a nurse. Smiles and handshakes. None of this, ‘how are you?’ business, which later I came to react to from others, quite a bit. Instead we went straight into it. ‘I thought you had the consequence of medication you were taking, but the biopsy has told me differently and I’m sorry to tell you that its breast cancer.’

‘What????’ ‘For **** sake! I, me, doesn’t get potentially terminal illnesses! I’m here on this earth to be by the side of those who have things like that. I’m the buddy of the man with AIDS. I’m the friend who stands with the carers of those with dementia. I’m the one who conducts the funerals of those who didn’t make it. BUT I am not the one who gets the finger!!!! Hasn’t god ordained it to be like that?

Worse news was to come. A mastectomy would be necessary. Perhaps further surgery to remove lymph glands. Then perhaps radiotherapy, chemotherapy and god knows what else. Partner and I look at each other, unable to mouth what we are feeling, but at least we are together in our grim silence.

Nigel and Roger

CHAPTER 3

How on earth do single people; those without partners; those alone. How do they deal with that news? How do you focus, and even move forward following such news. It’s good having someone else there with you, better than nothing, but there comes a point when you are left alone, alone to cope with such challenging news. Your friend has their own home, their own life to lead; they cant stay with you for ever. How do you deal with the solitude after they have left, when the sympathetic phone calls haven’t helped, when you wake in the middle of the night and the horrors about your future hit you.

I immediately thought of my friend David who had lived with liver cancer for well over a year. He had not lacked visitors or phone calls, but who as I now realised, nevertheless, had much more time alone to cope with his condition after his visitors had gone.

Look, folks! There is an LGBT issue here. We are many – more of us in the 45+ bracket than in the 15 – 44 bracket. We are more than likely to be living alone. Perhaps a third of us will experience cancer. Many of us will die from it. Where are the mentors, the advocates, the befrienders, the social workers and nurses, who understand our distinctiveness, even our uniqueness, and can be there by our side to see us through. In the night watches, when I awoke and considered my position, I gave thanks that I had someone I could say ‘cuddle me’ to, and I thought of those others within our LGBT community who have to face all this alone because we have not mobilised our forces/resources to serve their needs.

CHAPTER 4

I’ve always been different and so not surprisingly my cancer would have to be different too; wouldn’t it! There are only about 300 men per year who get it and I expected that this would mean being left without support, but, hooray, I was wrong. Our first meeting with the breast cancer nurse was accompanied by a superb and informative booklet on breast cancer for men and I soon gladly came to realised that I was not being treated as an honorary woman, with a women’s condition, but as a man who just happened to be amongst a very small but increasing number of other men who are succumbing to the same condition as thousands of women.

That is not to say that there are not psychological issues which may be peculiar to men . I was told that some men have real problems coping with the sheer fact of their different cancer. Perhaps even some might wish they had prostate cancer rather than breast cancer; they at least would have a ‘man’s cancer’. I noticed even within myself that when I told people I left a short gap between the ‘I have’ and the ‘breast cancer’ part of my speech. Perhaps even I felt something not quite right about having it. I was shocked after surgery by how unwilling I was to look at my new self in the mirror, and, when I eventually did it, how upset I was by the sight.

I meet people who still do not know that men can get it too, and I suspect that some might even feel that I had done something wrong, like smoking, to get it. I would love to meet other men in the same situation, but so far, I have found none. Perhaps the enormity of their burden has led them to go to ground. I wonder then if there are any other gay men with the same condition and wonder if I could even be only one in this country.

CONCLUSION

And so it has gone on. The surgery is complete and we (thank god its a ‘we’) have decided on the treatment which is best for us in our situation. From now on, every day will be a bonus day but these days will not be like the other days before the diagnosis. I’m still discovering how you think positively about the future most of the time; how you make a continuously proactive response to living ; AND how you confidently take your place within the male gay community with only one nipple!!!!!!! All things are possible, eh?

Roger Newman

I pondered how much I would have loved to have had some ‘out’ LGBT staff around me, so that I didn’t feel so isolated and had more confidence to be me.

In today’s post Roger Newman explains his feelings around being a gay man with cancer:

Its over 40 years since I took my first major steps in ‘coming out’ as a gay man. Not for me the carefully staged video explaining to adoring fans that I was dating another man and nor for me the consequent letters of congratulation arising from it. No this was and, still lingers in the memory as, a major event accompanied by not a little trauma. In the space of just a few days I stood before distraught parents, an incredulous spouse,  and unbelieving fellow workers, telling all of them something which obviously seemed to them, at the time, as being not far from the announcement of the imminent end of the world. For me I feared that it might indeed mean the end of my world.

The years have considerably numbed that feeling. Well, at least that’s what I thought had happened until just a few months ago when I was diagnosed with breast cancer and faced two bouts of surgery, with stays in hospital.  You probably don’t see any link so far in the story so let me explain.

My ‘coming out’, like that of most LGBT people of my age was always going to be a selective process and was accompanied by the building of defensive walls around my life, just in case I might find myself in situations where being known as being gay might be a threat to my security. I had never felt that I needed to tell everyone but, once in a settled situation, I didn’t need to deny it either. All those who mattered to me knew the facts and when I felt safe enough, in a professional and less personal situation, it didn’t require much courage to admit it there as well.

The days following my breast cancer diagnosis have signalled a change in those feelings. I have been so fortunate to have a loving husband with me when all this kicked off but I hadn’t expected that now would begin a Stage Two of my coming out. I had never envisaged that there might even be something called ‘Stage One’.

To begin with I felt it necessary now to say to those dealing with my cancer care that nothing short of proactive acceptance of me and my sexuality, and of our relationship, was what we both wanted and I was clear what that acceptance might entail. It mattered to me that when the lovely cancer nurse phoned she began by asking if it was Nigel or Roger she was speaking to, an approach so much more acceptable than simply asking ‘Can I speak to Mr. Newman, please’. For us that was a sign of what we would call proactive acceptance.

When after my mastectomy operation, and told that I was being moved into another ward, when I asked that my partner be informed, and told that yes, SHE would be told, I felt I had to make it clear that such mistakes should never need to happen, since it should be basic in service providers training that a person’s sexual orientation should not be presumed. Having a proactive approach to inclusion  means  that if 5% of the adult population is LGBT, and if in one day you are dealing with, perhaps 20 clients, then one must assume that at least 1 of them might be LGB or T.  In that hospital ward I was that 1 in 20; they got it wrong and it mattered to me.

Nigel and Roger

More significantly, however, my stays in hospital have had a totally unexpected effect. To be honest, I have gone back into the closet, when there!!! I had thought that those days were long gone, but now here they were, alive, kicking and frightening. I was appalled to find myself feeling that I was in a threatening environment. The conversations, times of visiting, and the general atmosphere, were so different from the gay culture, which I now realise had come to dominate the way I lived. So now I felt completely at sea and needing to be careful about what I said. I was anxious about the personal details I surrendered. I hardly dared mention a partner and I even found myself begging him not to kiss me when he visited me. His response, as expected, was ‘bollocks to ‘em, I love you’, but on his visits I could see the eyes taking it all in; sorting and codifying the resulting information. I found myself telling him that it was OK for him because he could take our lifestyle back home with him whereas I was left to deal with the consequences. I was profoundly disturbed by having these feelings and I felt guilty about them, but the fact was that there I felt and believed myself to be different. I pondered how much I would have loved to have had some ‘out’ LGBT staff around me, so that I didn’t feel so isolated and had more confidence to be me. Just someone with a ‘Me Too’ badge on them, would have helped.

So that’s where we are at in this stage of my cancer journey;  always hoping that proactive responses to us and our orientation will enable creative engagement to take place; knowing that there will now be a more regular need to ‘come out’ to others as the chain of service provision progresses and with the additional  fear that someone will respond in a less than satisfactory manner; and being so very grateful that, unlike the majority of LGBT people of my age group, I am not alone in facing the challenges of my condition. More of that last point perhaps in another blog.

You can follow Roger on Twitter @RogerNewman6 and read his personal blog here

Why I enjoy my role…

In today’s post, Edna Oni of Barnet Macmillan Advocacy Service tells us about her role:

This is a personal vocation for me and I really enjoy my job as an advocate and as a peer volunteer for the Barnet Macmillan Advocacy service. When I come across a client in difficulties, I cannot help but empathise, and giving them a voice and achieving their goals gives me great satisfaction. I feel my personal experiences makes me acutely aware of what another person is going through and strengthen my passion as a peer advocate for a positive outcome.

I feel I care more as a result of my personal experience. My own father died from lung cancer and my mother in law from breast cancer. Also, my very close friend died almost exactly a year ago.

Whilst the Cancer Older People and Advocacy work often demands a prompt outcome, sometimes it is not possible to help and one of my clients died before I was able to achieve their advocacy goals with them, which was saddening.

Edna Oni

Older people are often overlooked so being able to help in different ways, e.g. with housing, court of protection,  financial abuse is rewarding.  I feel I make a difference by communicating with various organisations on their behalf. The reasons why people contact our Barnet Macmillan Advocacy Service vary enormously and sometimes there are unexpected turns. One advocacy situation with a twist comes to mind involved Mr A, who was referred from social services. He had cancer, had a mini-stroke and was admitted to hospital and then was referred to a care home for 2 weeks’ respite. He really enjoyed the activities in the home and the interactions with other residents so much so that he did not want to go home!

 

At the initial visit with Mr A and his social worker, I informed him that Social Services dictate was for his leaving the home. He refused, telling me he was not going to leave as he had broken up with his partner and there was no one to look after him. His health had improved while he was in the home and the social worker agreed. He felt that if he left his health would deteriorate and he would die. Social services were clearly more interested in funding issues whilst advocacy is completely client centred. I had to press Mr A’s case very strongly emphasising his right to a good life. Social services arranged for him to live in the home on a permanent basis and I thought job done!

Two weeks later I received a call from social service to deal with financial abuse of the same client. His ex-partner had withdrawn over £3000 of his money from his bank account event though a block had been placed on the account. The bank was extremely unhelpful to begin with, but I persevered and eventually they admitted their mistake, refunded the money and paid compensation of £250 for his distress. Mr A was happy and so was I.

Rhonda Oliver

 

 

We’re delighted to welcome Rhonda Oliver to Advocacy in Barnet on May 9th as Project Manager and have our full team complement. Rhonda was previously working with Macmillan and North London Hospice as Project Manager on the Macmillan Specialist Care at Home Project. This project was designed to provide people with life-limiting conditions have more choice about how and where they received their care.

“this empowered her to then make the next step on her own…”

In today’s post John, one of our dedicated peer advocates tell us his story:

I came to volunteering following my retirement. I wanted to use some of the skills I had acquired during my working life in hospitals and my own personal experience of cancer to support others.

As a volunteer advocate for Age Connects Cancer and Older People Advocacy project, I provide non-judgemental support ensuring that the older people’s views and wishes are represented. As a volunteer advocate I ensure there is a better understanding of the clients’ needs, and follow instruction solely from my client; confidentiality and trust is key to this role.

One call was to support a lady with her decision about moving. I went to visit her at home and found she lived in a top floor flat with no lift. She had difficulty walking so was finding herself increasingly staying at home and going out less as she couldn’t face the thought of struggling with all the stairs.

She asked if we could gain some information from her Housing Association, so with her consent they were contacted and the information was obtained on her behalf.  This information was discussed when I met with her face to face and we chatted at length about her possible options. She liked living in a flat as it was small and manageable. She also liked living on a higher level as she felt safe. However, she understood that with no lift and an impending operation which would incapacitate her even further, life in her top floor flat was going to become even more isolated and difficult. We talked further about the possibility of improvements she may find in her daily life if she moved to a property that had access to a lift and following this she felt more confident to phone the housing association to discuss her options and take it further. Having someone to talk to was vital for this lady, she had limited family and initially she didn’t know how to start the process of enquiry about moving, or even whether it was a viable option. Having spent time with her talking this through, I feel this empowered her to then make the next step on her own.

Another call was to visit a lady in Llandough Hospital. She had battled hard against her cancer and was now receiving end of life care in hospital. There was an absence of relatives so she was pleased to see a visitor. I had previously assisted her with some paperwork when she was at home, so it was nice to see her again, albeit in sad circumstances. I sat with her, held her hand and waited to see if she wanted to talk. When someone’s very unwell they may not want to listen to a chatterbox! Just being there and holding hands can help a person feel better.

She said she had declined physiotherapy because she was frightened in case she should fall. I spoke with the ward nurse and voiced the clients concerns – we arranged that the physiotherapy would start again.   I enquired about my clients care as there had been some queries about a move to another hospital, at that point in time she was too poorly for a move to take place and going home was not an option as there was no one to take care of her.  The process of what was currently happening was explained to my client and she understood why these decisions had been made. I made arrangements to visit again the following week, but very sadly my client passed away.

Through my volunteering work I support older people who have been touched by cancer with a range of issues, and hope to continue to do so. I can’t help with everything but I do my best. I make the extra effort to give my time and listen – I always listen.

John, peer advocate, Age Connects Cardiff & the Vale

Living in Cardiff and the Vale? If you or someone you know over the age of 50 is affected by cancer and could benefit from our service, please get in touch to discuss how a volunteer advocate could help you.

Call 029 2068 3681 or email copa@ageconnectscardiff.org.uk

 

 

“There, there” and “keep your chin up” don’t quite cut it these days

One of our Cancer, Older People and Advocacy programme volunteer coordinators recently wrote the following post:

As a volunteer co-ordinator for one of the Cancer, Older People and Advocacy projects I would like to share a personal story with you today.

In September 2015 my best friend rang me up for what I thought was our usual weekly chat. We have known each other since college and she knew what our family went through when my father passed away over ten years ago as a result of a very aggressive brain tumour. Whilst we were not particularly close at that time I know I could have called on her had I felt the need.  This particular phone call was to tell me that her estranged sister had been rushed into hospital via A & E with what turned out to be a brain tumour.  The family were all in shock and as a very successful recently single woman, it brought home to my friend, the reality of living alone.  I am on hand when she needs me and I have been able to support her as and when she needs. It’s all done at her pace and when she feels the need to pick up the phone or come over to visit.

A couple of days later another close friend, informed me that her aunt had been diagnosed with bowel cancer.  She had been unwell for a few months but not felt the need to go to the doctors as she thought it was just a bit of constipation.  Sadly this story ended quite abruptly just before Christmas when she passed away at home with her family and friends around her.  Funeral arrangements were rushed through as it was all rather sudden, no one had even discussed any of this as they were not expecting it.

The third part of this story (everything comes in threes) is about another very dear friend who had a breast cancer diagnosis about eight years ago.  She is a survivor and has since retired and try as I might I couldn’t get her to join our project – I knew she would make a brilliant advocate!  Her reason was that she had done volunteering all of her life and she simply wanted to enjoy not having to go to work, to enjoy her ever growing family and friends and to do lots of painting. 

We had planned a trip down to South Wales in September and as I hadn’t heard from her I rang the house to check what the plans were.  I spoke to her partner who told me she had been diagnosed with Inflammatory Breast Cancer and the trip was off.  I certainly didn’t argue with that and we agreed that I would visit whenever she felt up to it.  Things have progressed quickly and she has been informed she is Stage 4. In her words “At stage 4 the horse is already out of the stable”.

We have spoken lots on the phone, usually early morning when I know she is awake and usually to laugh at some of the posts on her Facebook page!  For goodness sake, if broccoli and chicken soup were the answer we would be rid of this awful cancer.  “There, there” and “keep your chin up” don’t quite cut it these days.

I suppose the point of sharing this is that everyone’s journey is completely different.  For some it is far too short for anyone to make a huge difference. For others it is a complete shock and they have to take on so much information that they never even knew existed, let alone have to deal with.  Then we have the likes of my friend with Inflammatory Breast Cancer.  I spent the weekend with her and her partner, there was dust where there hadn’t been dust before, clothes drying on the radiators, we prepared and ate dinner in the kitchen (not at the beautifully laid dining table) and we drank low alcohol wine! Unheard of!  We sat in our pyjamas till about 2pm on the Sunday, we drank copious amounts of tea and coffee and we laughed.  There’s no great rush to fulfil bucket lists, no urgency to do the housework, lots of time for family and friends and lots of tissues to wipe away tears of sorrow and tears of laughter. 

I am going to be there for her, on the end of the phone if that’s what she wants, responding to an email if she wants any information and I can jump on the train if she wants company.  This I doubt will be requested often as in her words, she is the matriarch of a huge family (including ex-husbands and new wives) who love her and will do anything they can to make the journey as easy as possible.  Her advocates will be her family and friends, they will make the lists, check calendars, arrange appointments, organise prescription deliveries, hold her hand, ask the questions, investigate recipes, send links to websites, make her laugh and generally do what needs to be done.

Then I am back at work. The people who use our service don’t have what my three friends and their families have.  They are expected to ask their own questions, organise their own diaries and transport, sit alone on wards waiting for chemo, cook their own meals which often they won’t eat and end up throwing away, explain to call centres in faraway places they don’t want to claim PPI…….. They are dealing with all this and more on their own.  So that I suppose, is why I am so passionate about the work we do for older people affected by cancer, I can see the different levels of support that is available and realise that it’s not an equal playing field and what a struggle it can be.

If you will allow me to jump on my soap box, I will mention one more thing that my friend (and my mom) find highly irritating ……………… it’s not a fight, it’s not a battle, you won’t beat it, people who die as a result of cancer haven’t given up, they want to survive as much as the next person.  If only the media would stop using this language which insinuates that the person has given up.  Stop sensationalizing it, not everyone has the same chances, the same amount of time, the same levels of support and the same cancer.  That’s why COPA is a fantastic project and the volunteers who give up their time to help others deserve a massive THANK YOU.

My friend has started a blog about Inflammatory Breast Cancer and I would like to share it with you at some stage, when she is ready to make it public.  This is a very rare form of cancer which doesn’t have the same signs and symptoms of other breast cancers.  If you want to read more she has found some really useful information on these websites:

http://www.webmd.boots.com/breast-cancer/guide/inflammatory-breast-cancer

http://www.ibcresearch.org/

It’s a marathon, not a sprint…

I’ve written before for the blog about how last Christmas Eve I suddenly found myself an older person affected by cancer when my 23 year old son was diagnosed with advanced cancer.

As the time has passed and he has moved from one treatment regime to the next and to the next I’ve come more and more to realise that this cancer lark isn’t something that gets dealt with quickly and passes out of your life. It’s no sprint. It’s an everyday reality that’s with you from the minute you wake up in the morning to the minute you (try to) sleep at night, day after day, month after month. Soon, for us it’ll be a year. A year as a family we’d like to forget.

In that time we’ve come across so many fabulous, dedicated NHS staff. They work 12 hour shifts without batting an eye, they look after you body and soul, they don’t forget that the patient’s family are as traumatised as the patient. We’ve come to know than the NHS’s best resource is its people.

As this marathon goes on for us I realise more and more that we’re not in it by ourselves. The support we have from family and friends can be humbling at times. They go well out of their way to do something because it may help. The little things, like taking the washing away and bringing it back clean and ironed, when you’re 180 miles from home, that’s a big help. Things like travelling 240 miles each way to visit for an hour because you’ve heard the news, those make you realise how good people intrinsically are.

Whilst all of this is going on I constantly remind myself of how lucky we are. I’ve always been a glass half full kind of person, trying to look on the bright side. This whole cancer experience so far has been horrendous but at the same time it has been inspirational. I have a fabulous relationship with my son with whom I’ve spent countless hours chatting at all times of the day and night; I look forward to seeing my daughter and my husband, the time I spend with them is precious. Being so far away from home for long spells, I look forward with so much anticipation to seeing them walk through the door.

I appreciate the fact that I have a fabulous support network around me. I also know that I’ve been acting as my son’s advocate, ensuring that when he has needed it I’ve been putting his point across and explained things to him that he may not have taken in the first or even the second time he has been told because of the effects of his treatment. Our trusty notebook is full of notes taken at every consultation. It gets filled with the questions he wants to ask, then the answers he receives so we can always refer back.

The older people affected by cancer that we support in our advocacy work may not be so lucky. Many don’t have close family and friends and even those who do may choose not to share their feelings and concerns with those they love most. Some may have family but they may be many miles away. All of that makes me more convinced than ever that the work we do in recruiting, training and supporting older people affected by cancer to provide peer advocacy for other older people like themselves is vital. The pressures on everyday life brought on by a cancer diagnosis are immense and every day our advocates provide support that makes a real and tangible difference. Long may it continue and develop.

Marie McWilliams, OPAAL National Development Officer