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)

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I became a peer advocate because having had cancer, I felt that I could be of help to other people.

Deb McGarrity, delivery partner AgeUK Northumberland’s paid advocate, gives us an insight into what it’s been like delivering the older people’s cancer advocacy service in Northumberland recently. In what is Volunteers Week, Deb also introduces us to Marion, an older person affected by cancer, who has become a peer volunteer advocate:

Since the end of last year the Age UK Northumberland Macmillan Cancer Advocacy and Older People project has steadily been receiving referrals, there have been 24 cases since December 2015.

Without a volunteer coordinator it has been a challenge to keep our volunteers engaged and supported, this has partly been achieved through a good relationship with local Macmillan who opened up their volunteer training schedule to our volunteers. Our volunteers have taken advantage of the Macmillan training by participating in training in Bereavement and Loss, Specialist Palliative Care, Cognitive Behavioural Therapy and Prostate Cancer.

Volunteers have also accompanied the paid advocate on visits and are slowly beginning to have their own cases. One volunteer, Marion Young has started working with a client who recently was given a terminal diagnosis. When I asked  how she feels about being part of the project, Marion responded by saying:

“I became a peer advocate because having had cancer, I felt that I could be of help to other people. I am looking after my first client who has been given a terminal diagnosis. With the guidance of Deborah and the client’s permission I have written letters to the GP and Macmillan to support her with her request to be able to move nearer to her daughter. I am going with her to the hospice. I am meeting with her beforehand to note any questions that she has, giving her empowerment that enables her to understand what will happen.”

Marion Young

From my own point of view it has been great being able to include the volunteers in client case work. Not only are we utilising their experience to help our clients but I too am learning from them which is extending my expertise and informing my practice. I can see too that the clients also really appreciate having someone to support them who has also been affected by cancer.

Deborah McGarrity, AgeUK Northuberland

I went to Jake’s funeral yesterday. I don’t know if it’s the role of an Advocate to attend the funeral of an Advocacy partner but I was afraid there might be nobody there.

Let me tell you about Jake as he told his story to us. A few months earlier he had been told by his cancer doctor/oncologist that his cancer of the pancreas had spread to his lungs. It was not a good prognosis but he suggested one more session of chemotherapy. He had no one to turn to for support except the doctors and nurses on the oncology team but on his way out of the hospital he passed a notice board that had a brochure describing the work of Dorset Cancer Advocacy and took it home with him and later made the call to get help.

On my first visit I found Jake in front of a giant TV screen that dominated his small living room. He told me that he had bought it as a result of his diagnosis a few months earlier. Jake told me that he had no social life and rarely left his home except for shopping and other essential trips. He only had one sister but they had quarrelled over the care of his mother and he hadn’t seen or spoken to her since. At one time he had an active social life and was involved with his church and a local tennis club but had become a recluse. He had one friend who he rarely saw and spoke to and who was unaware of Jake’s condition. Jake was truly alone.

He felt that with advocacy support he would be able to get out more, enjoy outings or clubs around his interests, and meet people in cancer support groups – “The more I get out, the more I’ll improve my health”.

Jake was directed to various social groups but even with encouragement he chose not to participate unless accompanied by someone. Meanwhile his health was deteriorating. The emerging picture was that Jake was in denial about his condition as he was spending large amounts of money to improve his house (new carpets, bathroom, stairlift) so that he could continue to live there. They were disrupting his life and his house was full of items that hadn’t been fitted.

Janet from Dorset Macmillan Advocacy

We spoke about further improvements and purchase of equipment and he decided to delay them until he got the latest reports from the oncologist.  I went with him on the day of his appointment to receive the news. He was told that the disease had progressed and further treatments were not an option. He would be referred back to the care of his GP. Jake had little to say about this news but bearing in mind his plans for his home I supported him in asking the doctor what the time scale was likely to be and he was told it would probably be a matter of months.

On the way home, Jake repeatedly said “So now we know” and I realised that we were embarking on a different kind of journey. I fixed up a meeting with the palliative care nurse to bring in the necessary support services to keep him at home but before we could implement our plans Jake suddenly became very ill and was admitted to the local hospice where he died a week later.

Fortunately the hospice had a phone number for his solicitor and he had prepared a will with instructions for his funeral. The solicitor contacted me and I told her about Jake’s old friend that he had mentioned at one point. I remembered that a phone number might be found in the house. She was able to contact the friend and I was able to tell him about Jake’s last days. His friend asked me to contact the church to see if they could locate any other of Jake’s friends and acquaintances

So at the funeral I was not, after all, alone. John’s friend was able to come, his solicitor also was there as were two ladies from the church lunch club. It was a sad affair and the vicar made the service brief, pointing out the increasing number of funerals where families are dislocated and friends are predeceased. As Jake’s advocate, I felt that I had played an important role in supporting him not only as he approached death but also afterwards.  This was worthwhile for us all.

Janet Lister, Dorset Macmillan Volunteer Advocate