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

Facing Cancer Together: we’re demonstrating the power of independent advocacy

We’re really excited today to announce the publication, in partnership with Macmillan Cancer Support, of our latest collection of older people’s cancer advocacy stories entitled Facing Cancer Together.

In 2014 we published Every Step of the Way, a set of patient stories which illustrated the need – and value – of peer advocacy services for older people living with cancer. In this, our second publication, we bring together a further twelve stories of overcoming struggle, loss and anxiety, illustrating a new reality of what older people living with cancer can and should experience.

But these stories also speak to a broader societal truth, and contradict the common narrative that the pressure from an ageing population with increasingly complex needs is overwhelming our health and social care system. At the heart of that narrative is a prejudice that older people are somehow too needy, too frail, too dependent and a burden the rest of society is expected to carry. This kind of prejudice robs older people of voice, choice and control. Advocacy – such as in the stories contained in Facing Cancer Together – seeks to return them.

When we read stories like these, we aren’t just reading about the experiences of one older person with cancer; we’re also being gifted rich insight on the big challenges facing policymakers, commissioners and practitioners, such as how to deliver high quality, compassionate, person centred care that enables people to be equal partners in their care; and how to tackle marginalisation, social exclusion and uncertainty; and how to manage the impact of cancer
on family, or emotional health, or housing.

Those challenges are for us all, regardless of age, and the methods of addressing these challenges, by investing in peer advocacy and support, greater community engagement and creating the motivations of staff to involve patients in their own care have a net benefit for all of society.

 

Stories are powerful not least because they have the capacity to tell us something about ourselves.
The twelve stories in Facing Cancer Together represent the wide range of experience that our advocacy programme
has encountered across 1500 plus cases over the past five years.

 

We hope that they most of all resonate as examples of the actual support available to provide reassurance, companionship, dignity and, most importantly of voice, choice and control.

We want to thank all of those who were willing to share their stories with us, and the many advocates involved in
the programme.

Jagtar Dhanda, Head of Inclusion Macmillan Cancer Support & Kath Parson Chief Executive OPAAL

If the news is really bad, he will be there to help me get through it

This is why our Cancer Older People and Advocacy Programme matters so much:

Our volunteer peer advocates have been supporting people like Ron: “When the letter came, it said I should take somebody with me. The problem is that I didn’t know anyone well enough to ask them to go with me.

I should have realised that I was going to get some bad news by the fact that they did suggest I didn’t go alone. Anyway, I did go alone and yet despite the clues, I was really shocked that I was told that I had prostate cancer. I went numb and my brain stopped working. It was all in a haze.

Later on I couldn’t remember anything that the consultant said to me. I know I was given a lot of leaflets because I had them when I got to the car. I don’t remember driving home at all. I felt a great sense of confusion, apprehension and got very depressed very quickly. I couldn’t bring myself to look at the leaflets that I was given because the whole idea of having cancer was terrifying and I had this idea that if I didn’t look at them, it may go away. Stupid when I look back.

I couldn’t even decide if I wanted to tell my children about my illness. I can’t really tell you why I felt like that. It may be I didn’t want to bother them, or maybe I was trying not to confirm the fact in my own mind. I was frozen and unable to do anything. I did come across somebody who knew about the cancer advocacy services. They gave me the leaflet and I called for help.

A volunteer advocate called David came along to see me at home. I got on very well with him from the start. He assured me that all the things that we would talk about would be confidential, which was still important to me at that time.

David was a really good listener and I was able to tell him my story very easily and without any difficulties. He had had an operation for cancer himself and was undergoing observation still. We talked for a long time in that first meeting and the longer it went on the more relaxed I began to feel. I was still worried of course but my brain seemed to be starting to think again.

One of the things that David and I decided to do on his second visit was to put together a list of questions that I should ask the doctor at my next appointment. I realised that I didn’t know anything at all about my illness and any treatment that might be proposed. David offered to go along with me to that appointment and I quickly agreed. I knew that I would probably not ask the questions or remember the answers if I went alone.

In the meanwhile we went through the leaflets that the Consultant had given me and together we got the picture of exactly what it was that I was suffering from and what might be done to help me. At our next meeting I had moved along far enough to tell David that I hadn’t told my daughter and son about my diagnosis. We talked and I decided that I wouldn’t tell them yet as I wouldn’t be able to answer the questions that they would have for me.

David and I started to look at possible sources of care that I may need. We also looked at various ways that I might be able to make myself more financially secure, or viable, as I was then starting to worry about money. I don’t know why at 72 years old. He found me the address of various places that offered advice and then helped me write a letter. I don’t have any answers yet but that at least has started that ball rolling.

David came along to the meeting with the Doctor and it was good that he did. Along with the trauma of all that I had been told, I have to confess that my memory has begun to fail me as well. That’s been happening for a few years. David was able to take notes and ask the questions that I was missing on my list. The Doctor was very good as well and he was very patient with me.

I look forward to David coming around or telephoning me. I know he will be there when I need to go to the consultant again, which is coming soon, when he tells me what is going to happen. I will not have to go to another appointment alone. If the news is really bad, he will be there to help me get through it. If it’s a matter of describing treatments, he will be able to ask the right questions and then tell me all about it when we get home.”

Cancer can touch every aspect of our lives. Some issues are resolved easily such as access to benefits or transport arrangements others are complex and take much more time.

All of our volunteer peer advocates take time to build that all important trusting relationship which enables the older person to confide worries and concerns. It is this trust that forms the basis of the relationship, our advocates understand the impact of a cancer diagnosis on the individual and are able to address worries and concerns with skill and sensitivity. That’s why our service is so different from every other. Our volunteer peer advocates really do have the gift of time.

You can read more stories like Ron’s in our publication Every Step of the Way which can be accessed here

Marie McWilliams, OPAAL

A visit to Willowbrook Hospice

Pat McCarthy, manager of the Cancer, Older People and Advocacy service at Knowsley Pensioners Advocacy & Information Service (KPAIS) tells us about a recent visit to Willowbrook Hospice:

As part of our delivery of the Cancer, Older People and Advocacy project we have worked hard to get to know other services in our area and to develop some great working links.

As part of this work we were invited to visit Willowbrook Hospice.  If you have a look at their website you can learn a lot more about the fabulous work that they do http://www.willowbrook.org.uk/

Myself and Val, who is our paid advocate, were able to attend this visit and it was so helpful to have an understanding of this great facility available in our area.  We met with Jane Finnerty who is the outreach services manager and we had a tour from Margaret McConaghy the inpatient services manager.

The day we attended, an outreach session was underway with many people attending to access clinics, to take advantage of therapies and to socialise.  There was lots of noise and laughter and we could see what a valuable space this is for people to be able to share their thoughts.

Margaret showed us around all of the hospice, a really beautiful with an overwhelming sense of comfort and peace.  Val and I were able to share our information with leaflets and copies of Every Step of the Way to be shared with staff and patients.

In the future we will also be attending their educational team meetings to give further information of our advocacy provision and Jane now has a seat on our local cancer champions board, so it would seem that a lasting relationship has been built.

Pat McCarthy, KPAIS

 

Engaging with the Dorset Clinical Commissioning Group

Graham Willetts, chair of Dorset Macmillan Advocacy’s Cancer in Older People Development Group has participated, along with other group members, volunteer advocates and staff, in recent consultations by Dorset Clinical Commissioning Group (CCG) about Cancer and End of Life services.

Two Public, Patient and Carer consultation events asked ‘What is good about current services and what could be better?’ and the Stakeholder (service providers from NHS and other sectors) consultation event asked participants to consider the collected responses to this question and to discuss in groups five areas including:

• What does it mean to plan and tailor cancer care around patients and carers?
• Do we need to focus more on survivorship? What do we need to do to support increasing number of patients living with cancer for 5 years or more?

The Cancer and End of Life Services clinical commissioning programme (CCP) is one of six set up by the Dorset CCG. The CCP is reviewing the priorities set in 2013 and looking to future trends and challenges, including the Better Together programme for integrated locality health and social care teams. The Dorset CCG will also launch a Clinical Services Review in the autumn.

Within the groups and during the closing plenary we described the benefits of independent advocacy to cancer patients and their carers and distributed copies of the case studies publication Every Step of the Way. Tracy Street, Regional Macmillan Involvement Coordinator, described the benefits of support groups.  Tracy and Paula Bond, Regional Macmillan Development Manager, were invited to facilitate two of the discussion groups.

In summing up Dr Lionel Cartwright, a local GP and clinical chair of the Cancer and End of Life CCP, said he was encouraged by the discussions. He also said that he would like people to be empowered in terms of deciding the type of care that they want.

 

 Pictured Sarah Turner, Principal Programme Lead, Dorset CCG and Graham Willetts

Kathleen Gillett, Dorset Macmillan Advocacy

Every Step of the Way being very well received

A copy of Every Step of the Way, our recent publication telling 13 stories illustrating the difference independent advocacy support makes to older people affected by cancer was sent to Annette Brooke, MP for Mid Dorset and North Poole Constituency. It was sent by project partner Help & Care who have been in regular contact with Annette in her role as joint-chair of the All Party Parliamentary Group on Breast Cancer.

Annette Brooke MP

Annette was really impressed by the publication and sent Help & Care a letter which said: “Thank you for sending me the booklet “Every Step of the Way”. This is a fantastic way of showing how treatment in the Health Service and associated services can be better accessed by older patients with the support of a well-trained advocate.”

She went on to ask for an additional 2 copies to give to her co-chairs on the All Party Parliamentary Group on Breast Cancer which Help & Care were happy to supply.

If you haven’t already you can download a copy of Every Step of the Way by clicking on the link at the top of this post. If you prefer you can order a hard copy, free of charge, from Macmillan Cancer Support by clicking here.

Hello my name is…Kate

Six months ago I heard about Dr Kate Granger. In August 2011 Kate then aged 29 was diagnosed with a very rare cancer, Desmoplastic Small Round Cell Tumour (DSRCT), a terminal diagnosis.

Kate is a hospital doctor who treats and cares for older people. Kate came into my life when I was feeling particularly uninspired at work, concerned as to the future funding of our cancer support work and to cap it all health worries had resurfaced with two of our four elderly parents. I ordered and read her two books, The Other Side which is the story of Kate’s gargantuan struggle coming to terms with being a patient, and the follow up The Bright Side which explores her return to work after a prolonged absence. Both these books had an immediate impact on me, apart from making me humble and grateful that I was not so diagnosed and having to cope with such a distressing prognosis, they served to give me the proverbial ‘kick up the backside’, giving me a fresh impetus to tackle our work with renewed vigour and energy.  Soon afterwards my elderly parent’s health turned a corner and we heard we’d been awarded the £1,000,000 from the Big Lottery Flagship team to continue and further expand our work supporting older people affected by cancer.

This award, along with our own recent publication Every Step of the Way which tells the stories of 13 older people’s experience of the difference advocacy support made at various stages along their cancer pathway, served to raise our profile somewhat and I was invited to speak about our work at the national annual NHS Confederation conference on 4th June. Kate had also been invited to this conference as a speaker, a very important speaker as she had been invited to close the conference on 6th June.

I was unable to be present on the 6th as I had a prior commitment elsewhere, however I was able to catch up recently, and once more found myself profoundly moved by this young woman’s story and her commitment to improving the lot of patients with her latest ‘my name is campaign’. A simple message yet one with the power to transform the relationship between doctor and patient. Kate has always been a strong believer in getting to know people’s names as part of building good working relationships with both patients and other colleagues. It is the first rung on the ladder to providing compassionate care and often getting the simple things right, means the more complex things will follow more easily and naturally.

Kate’s campaign has gathered momentum and will impact on many future relationships between doctor and patient, however until all patients can feel comfortable talking to the medical staff who care for them we will continue to need armies of advocates to step in and simply ‘be the voice’ of older people to help ensure they get heard by those in such powerful positions determining their treatment and care.

If you have a few moments do please watch the video below.

If you, like me have been inspired by Kate and wish to learn more of our work and how you too could become a trained advocate for older people in your area then do please get in touch simply email me kath.parson@gmail.com and I’ll point you in the right direction.

Points of Light: outstanding volunteers

On 7th April The Prime Minister launched a new ‘Points of Light’ award to recognise outstanding individual volunteers – people who are making a change in their community and inspiring and supporting others. 5 inspirational volunteers who stepped up during the recent devastating floods were named as the first winners of the UK Points of Light award for volunteering.

I believe every one of our amazing Peer Advocacy Volunteers would qualify for this award, volunteers like Bob, Marion, Annie and Audrey, all of whom feature in Every Step of the Way.

Bob has supported a number of older people affected by cancer including Brian. Here’s what Bob has to say about supporting Brian:

Brian is very intelligent, friendly and outgoing with a great sense of humour. He can no longer drive and is in constant pain of varying levels and physically weak. He can only walk a matter of yards with the aid of a walking stick or frame.
He lives alone in a small communal block of flats and when I first met him had extremely low self-esteem. Although previously very well-travelled and active he felt that he had few future prospects of a happy life. He found his condition very hard to accept and suffered bouts of depression and often became upset when speaking about his situation.

The diagnosis of cancer was incredibly difficult for him to come to terms with. Even though in remission when I met him, it was still hard to bear. He still has a few good friends but is no longer independent so cannot socialise as much as he would like. He spends most of his time in his flat watching TV. Brian’s cancer is now inactive and in remission for 2 years. He has regular appointments with his consultant and GP, both of whom he has a great deal of respect for. He speaks very highly of his current medical professionals.

A variety of pain relief drugs have been tried and the latest drugs give relief for 12 hours each day as a maximum dose. He sometimes becomes confused and forgetful. He has sometimes taken the wrong drugs or has forgotten to take them leading to potentially very serious problems. These have included passing out and hallucinations. I was present at one of these events. I’ve spoken to his nurses, doctors and consultants for his safety when he has taken incorrect medication.

Bob

Brian always speaks openly and honestly to me and we have a very good relationship. He knows that I understand him, will help him where ever I can and that I will never impose my views on him. We explore options to overcome problems or achieve things he wants to do. He loves to have a laugh and a joke too and not always to be reminded of the negative side of his situation.

I’ve arranged a bus pass, trials of motorised scooters, membership of the Myeloma Support Group and taken him to a meeting to introduce him. Whatever information Brian needs I source and provide it. Brian is able to speak up for himself. He did have an issue regarding his pain relief when in hospital. He decided not to take this further although I explained what the process would be to make a formal complaint.

Brian’s image of himself is now far more positive. He smiles more and we laugh and joke more than he used to. He has started to socialise more and is keener to “improve his lot” and not just accept his current situation. We have made a “bucket list” for 2014. I will help him achieve the things he wants to on it and help him make a list for 2015 too. Brian is much happier to use aids such as motor scooters and walking aids than he used to be. He used to say that “only old people use those” (I have convinced him otherwise). Brian says he looks forward to our visits and really values them. He didn’t regularly contact his friends but now has an item on his bucket list to do this fortnightly. Several items on his bucket list show a massive improvement in his outlook. He will question his pain relief regimen himself now to gain improvements and changes.

When I met him at first he said “I am no longer any use to anyone. I will never have another relationship with a woman.”
Now he says he looks forward to me visiting and having talks with me and he feels more positive about himself and he’s happy with his “2014 bucket list”.

We must all keep an eye out and be ready to nominate those we work closely with who provide such an invaluable service to older people affected by cancer.

You can find out more about the awards here

Watch Kath launch Every Step of the Way

Recently we launched Every Step of the Way our new publication with 13 stories about the benefits of independent advocacy as told by older people affected by cancer. Funded by our partners Macmillan Cancer Support, you can find out more about it by watching this short video clip of Kath at the launch event.

You can download a copy of Every Step of the Way here

Every Step of the Way

Tuesday 25th March sees the launch of our new project publication “Every Step of the Way“: 13 stories illustrating the difference that independent advocacy makes to older people affected by cancer.

Funded by our partner Macmillan Cancer Support, Every Step of the Way features the stories of 13 older people who have been supported by their peer advocates along the cancer journey. The stories are moving and help explain the significant difference being supported by someone close to you in age and experience, who themselves have been touched by cancer, make to everyday life.

Every Step of the Way is FREE as we wish to expand awareness of our work supporting older people affected by cancer. From 25th March a pdf copy will be available via this blog site but if you would like a hard copy please send £5 to cover administration, postage and packaging to OPAAL (UK), c/o 14 The Green, Handsacre, Rugeley, Staffs, WS15 4DP. Cheques should be made payable to OPAAL (UK)