We’re marking World Cancer Day

Since today, 4th February, is World Cancer Day, we wanted to mark it by sharing a story from our recent publication: Facing Cancer Together – demonstrating the power of independent advocacy.

Charlie’s story (as told by Karen his advocate with input from Pat, his wife)

Charlie was referred to the advocacy service by the Macmillan Benefits Advisor. He’d been a hospital inpatient for 9 months as he was still being fed through a PEG (a line straight into his stomach) after radiotherapy to treat throat cancer. He hadn’t been able to return home as an appropriate Care Package had failed to be put in place. Although he was free to leave during the day, he had to spend the night on the ward while the liquid feed was slowly fed into his stomach.

Charlie believed that the radiotherapy had ‘burned a hole in his throat’ and he had wanted to pursue a complaint about this but in fact this turned out not to be the case. Working with Karen his advocate he was able to understand better what was happening and why he was experiencing the symptoms he had. Charlie was also understandably really fed up at being stuck in hospital and wanted to get back to living as independent a life as possible.

Charlie and Pat

Charlie had a long history of alcohol abuse although he had long periods of sobriety. Throughout his adult life, during his more functional periods he had sustained a relationship with Pat and after his diagnosis she was there to support him. Unfortunately, prior to his diagnosis Charlie had been drinking heavily and found himself in a vulnerable situation where his flat was frequented by (often unwelcome) visitors and neither the location nor the condition of the flat meant it was a suitable place to be discharged to and for nursing staff to attend.

Due to his alcohol use, Charlie’s memory was very poor and when he was drinking he had been exploited financially by some individuals in his life. As a result a Power of Attorney was lodged with the local authority and his finances were controlled by a Deputy there.

Pat was keen to support Charlie and Karen his advocate quickly got to know them both. Together they were struggling to get things in place to facilitate Charlie’s discharge. Pat’s flat was too small to accommodate the medical equipment and visiting medical staff that this would entail and she understandably felt unable to take on the medical aspects of his care.

Pat describes Charlie at the point when he was first introduced to Karen, “He got very depressed. They kept saying they’d release him from the hospital, but it didn’t happen. They couldn’t sort out his care at home, so they couldn’t work out how to discharge him. He couldn’t eat, but he could drink alright. He told me he’d had enough.”

Charlie’s future was far from certain when Karen first met him, he’d had radiotherapy to treat his throat cancer but there was no definitive prognosis. Karen attended appointments with him and his partner (and latterly wife) Pat.

Karen supported Charlie at appointments, reminding him, ensuring hospital transport was in place and liaising as requested with health care professionals to ensure that he understood what was happening. She ensured he was supported to return to being able to eat some foods as soon as possible rather than taking all his nutrition via the PEG.

 

Once Charlie’s diagnosis became terminal, the focus of the advocacy centred on supporting him to stay in control of his life right to the end. Charlie desperately wanted to leave hospital and Pat and Charlie wanted to finally get married. The advocate was able to represent Charlie to both the Deputy administrating the Power of Attorney and his Social Worker to facilitate not only these wishes but also his wish to die at home.

Karen helped Charlie and Pat get appropriately graded on the housing list and successfully bid on a two bedroomed bungalow. When relations broke down with the Social Worker Karen negotiated on Charlie’s behalf so that he no longer had to deal with the individual who had made him feel very judged and misunderstood. When relations also broke down with the appointed Deputy all negotiations were carried out by Karen which alleviated some of the stress for Pat and Charlie.

Karen’s challenge to the attitudes Charlie encountered from some health and social care professionals meant that his wishes were respected and that, in spite of them not necessarily understanding his decisions, they were respected.

Karen and Pat

Charlie’s cancer returned shortly after he had begun to slowly eat solid food again and he was faced with a terminal diagnosis. Sadly, he passed away in December 2015.

Charlie’s wife Pat says, “Our advocate, Karen, helped with such a lot. She used to speak up to the County Council for me, because I didn’t want to get into another argument. She helped Charlie to get to his hospital appointments on time. She’d meet him in Poole to make sure he arrived. I’d have been lost if it wasn’t for Karen.”

 

You can read more stories about the power of independent advocacy support for older people affected by cancer in Facing Cancer Together which can be accessed and downloaded here

 

 

 

 

 

Watch our for our forthcoming publication of volunteer stories. It’s called Time: Our Gift To You. It’ll be available to read and download very soon.

 

 

 

 

Marie McWilliams, OPAAL

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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

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.

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

Specialist cancer advocacy support is invaluable, even for those with family and friends…

In this post Valerie McGregor, advocate at KPAIS (Knowsley Pensioners Advocacy Information Service), tells us why it’s important that every older person affected by cancer has access to advocacy support if they want it, even those with family and friends around them:

I have recently had the pleasure of supporting a lovely lady who I shall refer to as Jane. Jane self referred into our service when she felt that she needed someone to talk to outside of her family.  Although Jane has a very loving and caring family and who are supporting her through her cancer experience, she didn’t want to burden them as they didn’t want to talk about practical matters arising from her diagnosis and prognosis.

Our first telephone conversation was about practical issues like benefits and how we could support her with form filling and making a claim, as well as information on other services which could offer practical support. I visited Jane at home to do her form and we had a long chat about everything that was important to her and what she wanted. Jane had said how nice it was to discuss matters without burdening her family.

 

Jane was very optimistic about her illness and the options available to her, but unfortunately Jane wasn’t able to have the surgery that was first discussed. As a result she now wants to put her affairs in order and generally wanted to talk about how she felt about what was happening to her, and what support we could offer her with general practicalities.

 

Jane has expressed her sincere thanks for the practical and emotional support we provided and how having a Cancer. Older People and Advocacy advocate has helped her to stay independent and in control, and asked that I stay in touch with her and visit her frequently just to have a chat and a cup of tea.

Valerie McGregor, KPAIS

Volunteer Peer Support Advocacy

Our advocate was asked to support a gentleman who had recently been discharged from hospital with a terminal cancer diagnosis. He had made the very difficult decision that he wanted no further treatment after trying a session of chemotherapy and finding that he struggled to cope with the side effects.  The chemotherapy was to help shrink the tumour only. The gentleman decided that he wished to look for a care placement to allow him to be cared for outside the family home. With the assistance of a Volunteer Peer Advocate he was supported to view care homes in his local area to enable him to remain close to his family. He wanted to spend the remaining months of his life with as much dignity and independence as possible.

The gentleman’s wife has advanced Alzheimer’s and lives with his daughter – her full time carer.  He wanted to put no further pressure on his daughter as caring for his wife was a full time job, also with the insight and understanding that his care needs would only increase, this in turn would increase her already heavy workload.

Our advocate was able to support this gentleman to act independently from his family with his choice to move into a residential home. He was accompanied by the advocate to view the care homes and the advocate helped him to discuss his care needs with staff and what the future will hold for him in respect of his terminal condition.

 ‘Their involvement meant the gentlemen could maintain his independence’

 

 Laura Thomas, Cancer, Older People and Advocacy Programme, Age Connects Cardiff & the Vale

Leslie’s story

Leslie was referred by a family member as he was diagnosed to have cancer of the lungs and bowel. It was also recognised that he had moderate learning difficulties which affected him in making informed choices, he also struggled with reading, therefore found information hard to access. Initial contact was at his home to ensure that he felt able to voice his concerns in a safe and familiar environment. During the first meeting we were able to discuss all the various areas of his life, in order for me to ascertain any areas that the advocacy support could assist him in. Over the next couple of meetings we were able to establish that he was having difficulty in retaining the medical information that he was given via his monthly hospital consultant meetings. It was therefore agreed that I would attend and we would, prior to the meeting, write down any pending concerns or medical problems Leslie was experiencing.

Upon attending the appointment I became aware that Leslie’s nutritional calorie intake was a grave concern. We therefore agreed that I would assist him in exploring different types of liquid nutrition that he could take to enable his weight to remain fairly steady. Consequently until his health deteriorated considerably he was able to maintain his weight at a satisfactory level.

Unfortunately due to the nature of Leslie’s illness, his cancer being untreatable and terminal his needs have been continuously changing. As an advocate I have been able to accompany him on his journey. I was able to assist him with acquiring walking aids and having modifications made to his property such as extra railing support along the stair case.

More recently sadly, Leslie has deteriorated considerably and his social isolation has meant that he has been unable to meet his basic care needs. As a result I was able to help him identify various care package options. He is now receiving a care package at home, and I am still supporting him with his numerous hospital appointments. As his needs evolve my advocacy support will change. We are now currently identifying accommodation options, looking at various care homes and discussing his wishes with regards to palliative and end of life plans.

This clearly has been a very challenging journey for Leslie, particularly as he has been socially isolated and felt very alone. Advocacy support has allowed him to voice his fears and concerns and crucially ensure that he understands the procedures and transitions which sadly are imminent. Although advocacy support hasn’t altered the eventuality it has ensured he maintained his personal dignity and had respect and independence through a difficult time.

Aneesah Bana – Cancer Advocate, ICANN

‘Tis the season to promote Advocacy

The most interesting quotation that I gathered from a service user for the advocacy stories was this,

“If you are an older person with younger relatives who will make a fuss you will be alright.  If you are an older person, on your own, you get ignored”

This is particularly true at this time of year, and not just in relation to advocacy.  People are more aware of the support systems that they have in place and those that they lack.

As part of our ongoing promotion of the Cancer Advocacy Project and Sefton Pensioners’ Advocacy Centre as a whole, I participated in a Christmas Tree Festival, held at a local church.  Over 40 local charities and organisations each decorate a tree which is displayed for a week.  Members of the public visit the festival and make donations as they see fit for each tree/charity.  The event is very well attended locally by all age ranges and offers us the chance to raise awareness of advocacy in a different way.

Our tree

I decorated the tree with phrases associated with advocacy such as ‘independent’, ‘free to access’, ‘confidential’ and ‘helping older people to have their voice heard’.  In addition to this I had laid our plenty of our leaflets!  I hope that the tree will have been thought provoking for the people who saw it and that they will remember it if they are looking for support in the New Year.

Helen Vernon, Advocate, Sefton Pensioners’ Advocacy Centre