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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What Price Advocacy?

Today our thanks go to Jan Dyer of Dorset Macmillan Advocacy for taking the time to share her peer advocate’s point of view:

Cancer advocacy makes a difference now, and could make so much more. Advocacy saves the NHS money and provides better quality care, it makes cancer journeys better and easier to undertake.

Yes, you’re right, it’s very difficult to prove, it can’t be easily quantified. I could give you plenty of examples, but in pounds and pence, no. But I can tell you, that over the last three years, working as a Macmillan Peer Volunteer Advocate, I have seen it for myself. Let me share some of my experiences and pose some questions……

The patients, friends and families I meet don’t always have the tools to hold their home teams together and support their structure, they are floundering in unknown territory, with no experience to draw on.

There is a presumption that every relationship is in a good place at diagnosis, and that would be great but it isn’t the reality. Some rally and rise to the challenge, but some carry baggage on this trip, which can complicate the decision process and can make the going even harder.

Realistically, how much time do our overworked medical teams have to talk to patients and support team? For some, nowhere near enough.

If communication becomes difficult between home and medical teams, who steps in, pursues and explores possible solutions to get things moving forward again? How much easier is it to deal with patients if they come prepared for appointments because they’ve had time to discuss their worries, fear, frustrations and options in an objective environment first? Sometimes patients just want to walk away from appointments having asked all the questions they wanted to, with no ‘I wished I’d asked’’ moments later, with all the confusion and frustration that brings. Let’s face it, if it’s all new, how do you know what you don’t know?

Jan

Then there are the carers who, however well meaning, may not be not equipped for the very new situation in their life. Who want to do their very best, but don’t know how to or have time to find what they need. Who supports them? Anybody can struggle when practical problems come along, meeting unfamiliar challenges in an uncharted world.

Who will have time to discuss and help them make an end of life plan? When all around you, fearing a bad outcome are urging ‘Just be positive’ and driven by a ‘if you don’t talk about it, it won’t happen’ mentality? Who tells them, ‘you don’t have to be super positive every day, its normal to have bad days’, and gives them a safe haven to express this?

The possible situations are endless, and I haven’t even got to the easier basics like ’How can I visit my husband in hospital, I don’t drive?’ ‘How can I pay my bills, when I’m not earning at the moment?’ ‘How can I get my toe nails cut?’ etc. etc….

As an advocate, I have supported real people through all of this and more. I am trained and prepared to have the conversations that people don’t necessarily want to have with loved ones, if indeed they even have anyone to have these conversations with at all.

I would like the service to be offered to every person affected by a cancer diagnosis. The decision to accept the offer is theirs, the right to change their minds, at any time, one way or another is theirs. But in not making them this offer, it is in fact depriving people of a real opportunity. Advocacy offers each individual who is on an ‘unasked for journey through the unknown’ to have a ‘tailor made’ experience and to regain some feeling of control – which could completely change things for them – and in fact for everyone involved.

As an advocate, I have a few frustrations, but my primary one is clear; I don’t understand why an advocate is not offered to everyone.

Jan Dyer, peer advocate, Dorset Macmillan Advocacy


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Signposting to other local sources of support

We keep on top of new services and sources of support for people affected by cancer in Dorset because we recognise that people can benefit from many different types of help. Regional charity Wessex Cancer Trust  opened a support centre in Bournemouth last year which is open three days a week for people to drop in.

The centre manager, Emma Ormrod, recently visited us at Help and Care and met Advocacy Manager, Naomi Unwin, Macmillan Senior Advocates/Coordinators Jo Lee and Kathleen Gillett.  We discussed how our two services dovetail.  The drop in is ideal for people who are able to get out and about and would benefit from conversation with trained volunteers and other people affected by cancer on an adhoc basis.  Our service is ideal for those who find it more difficult to travel for whatever reason and offers regular support through an on going partnership with one trained volunteer. We can also give support at the person’s home and accompany them to medical appointments.

Naomi Unwin, Advocacy Manager, Help and Care; Emma Ormrod, Bournemouth Support Centre Manager, Jo Lee, Senior Advocate, Dorset Macmillan Advocacy

We’ve created an ‘at a glance’ document to help the volunteers at each service be aware of what the other service offers to facilitate signposting and referrals.   In fact our services already share a volunteer and advocates have visited the centre to accompany people who asked for support in going there for the first time. We look forward to continuing to work in partnership for the benefit of local people.

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

 

 


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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


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Emotional support needs are growing

What information and support needs matter most to people affected by cancer? Today Kathleen Gillett of Dorset Macmillan Advocacy, (DMA) tells us about changing needs and a greater requirement for emotional support:

Cancer Information and Support Services (CISS) are changing – at least that is the finding of a recent study of the Macmillan CISS which has involved a partnership with the Mental Health Foundation.  A workshop at last autumn’s Macmillan Professionals Conference presented the findings of research into the role of provision of information and support.  Macmillan CISS services are very varied with some operated by teams of staff and volunteers in large purpose built facilities, often on hospital sites, and others provided by a single part time worker.

Dorset Macmillan GPs Dr Paul Barker and Dr Simon Pennel with Kathleen Gillett of DMA

Dorset Macmillan GPs Dr Paul Barker and Dr Simon Pennel with Kathleen Gillett of DMA

The trend has been for people affected by cancer to be less in need of information and more in need of emotional support. A YouGov survey found that 83% of patients said that ‘being listened to’ is the most important thing.  If people are seeking more emotional support how are the CISS services reflecting this change and how are the service providers (staff and volunteers) themselves enabled to give this support without a negative impact on themselves?  Answers to these points continue to be developed by a working group of Information Managers within Macmillan.

Kathleen Gillett

Kathleen Gillett

Discussions during the workshop revealed a range of interpretations as to what constitutes emotional support and how to offer it.  A weekly coffee morning style drop in could offer low level psychological support in the view of one participant from a community palliative care team.  Ensuring that ‘all the patients have my phone number’ was seen by a nurse as being a way of providing emotional support. Another participant noted that patients with identified needs may sometimes decline a referral to psychological support because of unfamiliarity with the term and fear of the word ‘psychological’.

I made sure to explain to the participants of my discussion group the way in which peer volunteer advocacy can provide low level and ongoing emotional support. Not only can advocacy partners ventilate on occasion and be sure of being listened to but they can build a trusting relationship over time with their volunteer and know that they will not be judged as they share their worries and feelings.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy


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A day in the life of……..a peer volunteer advocate

Our thanks to Jill Wallace, who is a peer volunteer advocate with programme partner Advocacy in Barnet, for the following enlightening blog post:

So irritating, I have woken up so early as usual; the habit of waking as if I am going to work never seems to stop.  Priority is to feed my cat Izzie and have my first of many cups of tea and read my book before the newspaper is delivered.

Jill

Jill

There is an advocacy support meeting today which I am looking forward to as there will be quite a few new volunteers attending. I think it is such a great opportunity for the new volunteers to meet other advocates and have the opportunity to listen to the variety of work we carry out. We have a speaker at each monthly meeting and try to book other organisations working in Barnet; the information can be so useful to people that turn to Advocacy in Barnet (AiB) for support.

Very interesting support meeting ; it was very rewarding chatting to the new volunteers during our coffee break to hear that they felt relieved and happy at the level of support available to them at all times.  Today’s speaker will be of great interest to some of our clients; a family business that can offer bespoke meals delivered as and when required at a very reasonable price.

barnet logo

I have arranged an initial visit accompanied by Georgia, a trainee Social Worker working with AiB as part of her training. As the meeting was from 10 – 12 am we have plenty of time for a nice lunch and chat together before our visit at 2pm at Finchley Memorial Hospital. So far I am really enjoying my day! Spent lunch with Georgia discussing how much she had enjoyed and learned from working with AiB. Hearing how this had helped her as she was coming to the end of her training was very enlightening.

We visited our client Mrs A, age 90, at Finchley Memorial Hospital.  After explaining the support AiB could offer, and obtaining signed authority to act on her behalf, Mrs A spoke of the concerns she had regarding where she would live once discharged from hospital as she was aware that she was physically unable to live independently. Happily we were able to point out that Mrs A did have choices and advocacy would be happy to liaise with all the professionals involved to ensure that her opinions and decisions are listened to.  We discussed with Mrs. A the action we would be taking on her behalf to ensure they met with her approval.

Georgia had taken notes during the meeting which ended at 3.15pm; we spent 15 minutes discussing Mrs  A’s case.

Arrived home just after 4pm having had a very varied day, bit tired but pleased.

Jill Wallace, peer volunteer advocate, Advocacy in Barnet


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A very Happy New Year

Happy New Year to all of our readers and contributors.

We have great news to start off the New Year. As you may know we were shortlisted in November in the UK Blog Awards for this blog. Our entry is in the best Health and Social Care Blog category. OPAAL had to put out a big call to our members, stakeholders and friends encouraging them to help us through the initial public voting phase. We were up against some much larger organisations with a bigger social reach than us.

We must have secured a very strong number of votes because on Monday we received the news that we have been announced as a finalist, which means we eagerly await the judge’s vote later this Spring and in the meantime we have a new ‘finalist’ badge to display on our blog! We would also like to thank all of you who voted for us.

facebook-1-2It’s brilliant to have this recognition for our blog. We work tirelessly to secure new content to keep it fresh and our delivery partner projects work hard to make sure we have something new, interesting and timely to share.

This news will encourage us to keep writing; it’s great to be starting the new year on such a positive note!

We’re so happy to be showing the world the impact of independent peer advocacy and that #advocacyworks.

Marie McWilliams, OPAAL