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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My cancer journey

Our thanks to Rod, who shares his story with us below:

Hello my name is Rod and I have recovered from cancer. I was diagnosed with testicular cancer. It was a bit of a surprise but when my wife told me that my left testicle felt like a walnut I thought I’d better get this checked out.

I had surgery to remove the testicle, a very quick operation by the way, and it only took a day before I was walking around again. What I found most difficult to deal with was waiting to find out, I found that more difficult than the treatment. I eventually went to see the consultant and he informed me that the testicle was cancerous and that I would have to undergo a course of treatment. The treatment made me feel sick all of the time and after the first session I got back home and threw up! They prescribed me a course of anti sickness tablets but they made it worse! In all honesty I wasn’t scared about having cancer, my friends were more worried than I was. Don’t get me wrong I wasn’t happy about having cancer, but I couldn’t change it, I just had to live with it.

Just because you have cancer doesn’t mean that how you live your life has to end. Friends tried to wrap me up in cotton wool and protect me. I was a bit physically limited in what I could do (feeling weak all the time) but I wouldn’t let it stop me from going out and enjoying myself.

The consultant said that is was possible that the cancer could spread through my lymphatic system so the course of treatment was shortish but aggressive. What surprised me the most was still being able to have a physical relationship with my wife, which resulted in the birth of our twins, one of each, I was dead chuffed.

A while later I thought something was wrong again, as I was having constant diarrhoea. Consequently I had a endoscopy, which found nothing, and then a colonoscopy, where various polyps were removed. When I next saw the consultant he informed me that they were in the early stages of change. This time I was a bit worried, as this is what my father had died from. As it turns out I was fortunate, as this was caught early and very recently I received the all clear.

 

Rod

My volunteering

I am currently unemployed and signed off until April 2017. As a consequence I have plenty of time to spare. I was looking through the doit.org website and came across the peer advocate position, with Sefton Pensioners Advocacy. Certainly when my father was diagnosed with cancer there seemed little or no help or support, which really hadn’t changed that much when I was diagnosed.  I felt that through my own cancer journey and other members of my family I had something to offer in terms of support and guidance.

I have had two clients so far and they have very different stories. Although they are my clients I prefer to just think of them as people that I am supporting. They have both been unique, facing different issues and challenges. One client has already recovered from one form of cancer, only to find out that she has another. There are other complications as well, mostly to do with chronic pain, which she is having treatment for. The main issue this lady has is with mobility, as she had no blue badge she found it difficult to get around as she was limited to where she could park. I successfully applied for her blue badge, which has completely changed things for her, she can now drive to the local village and park outside the supermarket to do her shopping. She is really, really pleased with this as it has given her a greater sense of freedom. Her details were forwarded to the DWP and now she and her husband both receive attendance allowance. Now they can afford to have the house cleaned and garden maintained, which is very important to them both.

My second client has been completely different. He was diagnosed with lung cancer, which had spread to his brain and his diagnosis was terminal. His eyesight was also failing. His behaviour was challenging at times but a lot of this was sheer and utter frustration at not being able to express himself fully. I first visited him in hospital, with a colleague, and his behaviour was challenging. To be fair he had been in hospital for the best part of a month. Eventually he was discharged and he returned home and I was able to support him in terms of getting there, making sure a hospital bed was installed (he had been sleeping on the floor) and ensuring food was delivered (thank you Foodbank). However this only lasted one night and he was then readmitted to hospital. He was then reassessed and admitted to a nursing home. He was much happier with this as he had the space of the whole lower ground floor and a greater sense of freedom. I was able to support him in terms of getting more clothes and taking him to his property, to help him sort through his important documents and things.

He was initially worried about his funeral and also getting in contact with his estranged daughter. On investigation it became apparent that he already had a funeral plan. I helped him to make contact with his daughter again and also arranged for him to have regular communion. During the days before his death he deteriorated drastically, not communicating at all. As he was on morphine every three hours this was hardly surprising. Although I knew he had terminal cancer I still found it a shock when his nursing home informed me that he had died at 6:30am that morning. There were things that I still wanted to guide him with. I have an immense feeling of frustration that I was not able to help as much as I could, but sometimes things just work out that way. The final thing I could do for him was to make sure his daughter was aware of his final wishes and thus I made sure to communicate these to her.

I attended his funeral to pay my last respects.

Advocacy for me so far has been, challenging, frustrating but ultimately rewarding and will continue to be so.

Rod, Sefton Pensioners’ Advocacy Centre

“Advocacy kept me going”

Today we hear from Helen Vernon, advocate at programme partner Sefton Pensioners’ Advocacy Centre about Peter, one of the older people affected by cancer she has supported:

Peter referred himself to the Cancer Older People and Advocacy project after a diagnosis of cancer in June 2015. He had recently been told he was palliative.  He had spent 16 months in hospital with a collapsed lung.  Peter had moved in 2014 but regretted the decision due to some issues with the housing association. 

Peter had discovered that there was an electrical cupboard/water tank next to his flat.  His bedroom wall was on the other side of this cupboard and he found his sleep was severely disturbed.  We looked into the option of rehousing but Peter felt that since his diagnosis was terminal he didn’t want to spend the time he had left on a waiting list or moving house. Instead we asked that remedial work be carried out to alleviate the problem.

I negotiated with the housing association who had put in a request for the job to be completed, but it had been delayed because a surveyor hadn’t been to the flat.  The housing association actioned the job immediately.  I then continued to liaise with the housing association to make sure the job took place and that Peter was satisfied.  

In addition to this I contacted the Department of Work and Pensions to ensure that Attendance Allowance had been started and I explained to him when the payments would take place.

Peter’s family all live abroad and he felt strongly that they should be allowed to live their lives without worrying about him.  He spoke to me at length about his life and his feelings about the cancer. 

When the case was closed I asked Peter what he had thought about the advocacy process.   He said “(Advocacy) gave me a lot of hope that things would improve and they did improve, it (advocacy) kept me going”.

Helen Vernon

I recently contacted Peter again and he has asked me to revisit him as there are now some issues around his hospital care.  He would like me to write to the hospital on his behalf and to attend appointments with him.  A new case will bring new challenges as his health is declining, but with advocacy support Peter’s wishes will be represented and his voice heard.

Helen Vernon, advocate, Sefton Pensioners’ Advocacy Centre

This lady had told me that without the support of an advocate her situation was so desperate she would have committed suicide

Today Helen Vernon of Sefton Pensioners Advocacy Centre explains about a recent event hosted by Macmillan Cancer Support in the North West:

In May we were given the fantastic opportunity to present the Cancer Older People and Advocacy project to Lynda Thomas, Chief Executive of Macmillan, and John Pearson, Executive Director Cancer Support Operations.  Lynda and John were visiting the North West and it was decided by the Service Development Team that the best way to showcase all the local initiatives was by holding a stallholder event.

Our display stand

I arrived at the event, complete with our specially purchased display board, packed with information about the project and the publications we have produced.  Each stall holder had 5 minutes to present their project and the stalls were arranged in order of the cancer journey.  It was fascinating to hear about all the inspiring innovative projects that exist but a little frustrating that we couldn’t access them because of their boundaries.  Lynda and John listened to each presentation and then were given the chance to ask questions.  One of the main themes they focused upon was the way in which the learning from each project could be shared in other parts of the country.

I ended my presentation with a quote from a service user.  This lady had told me that without the support of an advocate her situation was so desperate she would have committed suicide.  The impact of this statement was evident around the room and I think it emphasised for them the importance of advocacy.  John was interested in where we got our referrals from and he offered to put us in touch with contacts he has in The Silverline and other voluntary organisations.  We will be following up his interest in the project and keeping him informed as to how it develops.

Helen Vernon, Sefton Pensioners Advocacy Centre

there must surely be a place for advocacy…

In this post Helen Vernon, advocate at Sefton Pensioners Advocacy Centre (SPAC), talks about collaboration, compassion, choice and advocacy:

In February I attended an excellent conference called Palliative End of Life Care: Collaboration, Compassion, Choice.  The event was attended by a wide range of interested parties including commissioners, consultants, GP’s, nurses and members of the voluntary sector.

One interesting thing that almost every speaker opted to do was to relate their speech to their own personal experience of losing a family member.  This had been the motivation for each of them to follow their career path, either because the experience had been so poor or because they wanted to replicate a positive experience for others.

There were several key pieces of information that came out of the day and I have attempted to summarise some of these below.

The keynote speaker was Jacquie White who is the Deputy Director for Long Term Conditions in NHS England with responsibility for improving the quality of life and experience of end of life care for people with Long Term Conditions and their carers.   As part of her presentation she showed this slide about the six ambitions she would like health and care professionals to sign up to to achieve improvements in care.  There are obvious links between these ambitions and advocacy.

Jacquie also spoke about their plans to develop an “orientation” process for people who have been diagnosed with a long term condition and she described it as a ‘how to’ for living with that condition.  If this became the norm there must surely be a place for advocacy within this programme.

Alison Colclough from St Luke’s Hospice in Chester spoke about their homelessness project and whether people who are street homeless get choice at the end of their life.  This also resonated strongly with our advocacy work and it made me consider whether we have explored this sufficiently when we are promoting our service. 

The theme of collaboration ran strongly throughout the day and there was a lot of advice about how this could be achieved. There were stories of success and advice about approaches to improving inter agency working.  Annamarie Challinor, Head of Service Development (Macmillan) for The End of Life Project shared this image with us, which we could use as a visual reminder of how broadly we are promoting the COPA project.

Helen Vernon, Advocate, Sefton Pensioners Advocacy Centre (SPAC)

 

 

 

Networking with our local Macmillan Information Manager

In this post Helen Vernon, advocate at SPAC (Sefton Pensioners Advocacy Centre) talks about local networking and partnership working with Macmillan Cancer Support:

I recently spent time with the Information Manager for Macmillan Cancer Support based in Aintree Hospital, which has been based there for about four years.  There were a number of useful points that arose from our discussion and I hope it will result in an increase in referrals from this source.

The Information Manager and the Information Officer have both worked within the hospital in other roles for many years.  As a result they know a large number of the professionals and have made fantastic inroads with regard to promoting their service.  This is particularly true in the case of the Cancer Nurse Specialists (CNS).  It therefore occurred to me that our time would be best spent promoting our service to other professionals in the hospital.  Clearly the CNS were referring regularly to the Macmillan Centre who will in turn refer cases to the Cancer, Older People and Advocacy project as and when appropriate.

We discussed one of the cases that they were involved in and we reflected upon how they intended to proceed.  They acknowledged that there was a role for advocacy in this case and although on this occasion they had completed the work, we could have provided an outreach element that they were unable to.  The gentleman in question was aged 52 so I was able to reiterate that we are able to work with people aged over 50. 

Helen Vernon

During the visit I was given information about a number of projects that I was not aware of, for example a clothing bank run by Macmillan that provides ten items of clothing for people who had experienced weight loss or gain.  This is such a useful resource and I am sure I will be referring to them in the future.

The Information Centre in the north of our borough sits outside of the hospital and so potentially the referral stream from CNS to Macmillan is different.  Therefore we will continue to speak with the CNS in this area.

Helen Vernon, SPAC

Working across boundaries . . . is it really happening?

In this blog post Pamela Hill, OPAAL‘s newest National Development Officer, tells us about cascading information to our Primary Care colleagues:

I recently spent two days representing OPAAL at the Macmillan Primary Care conference offering information to primary and secondary care delegates through our exhibition stand.  What an excellent networking opportunity the event provided.  While I wasn’t able to hear any of the speakers, I chatted with a number of Macmillan health care professionals.   They were all extremely positive about the event which was intended to explore how those involved in primary and secondary care can work in a more integrated way to provide the best possible outcomes for those people affected by cancer.  

Pamela alongside Karen Pierce from delivery partner SPAC

 

Delegates were very interested in the exhibition stands and many came forward to find out more about the Cancer, Older People and Advocacy programme.   It was a good opportunity to convince health care professionals who practice in areas where the project doesn’t already operate that we need them to influence their respective CCG’s by explaining the importance and benefits of advocacy support for older people affected by cancer.   Of course, this suggestion was met with the usual response that the CCG’s have no money left in their budgets. 

The really good news is that the GP’s from the 14 areas where the service already operates were very positive about their experiences of Cancer, Older People and Advocacy programme.    I even managed to persuade one or two GP’s who have experience of the benefits of advocacy support to bring their colleagues along to our stand so they too could learn about more about the Cancer, Older People and Advocacy programme. 

 

 

During the conference sessions, while the delegates were listening to speakers, I decided to introduce myself to the other exhibitors and they were all keen to explain their work to me.  They listened to the information I had to offer about the Cancer, Older People and Advocacy programme and we swapped contact details and information leaflets so that we are better able to signpost and refer.  I intend to share the information and leaflets with partners.  

Pamela Hill OPAAL and Karen Pierce SPAC

Working across boundaries?  Yes, I was heartened to feel it really is happening but we must continue to further develop the partnership approach so that we not only offer an holistic approach to services for those older people affected by cancer but wouldn’t it be a real step forward if we could offer the same services in every area of the UK? 

 Pamela Hill, OPAAL National Development Officer

Older people at higher risk of emergency cancer diagnosis

Angela Clarkson, Volunteer Coordinator for Sefton Pensioners Advocacy Centre, writes about emergency cancer diagnoses.

A recent Cancer Research UK published study has demonstrated that people over 60 have an increased risk of receiving a diagnosis of lung or bowel cancer via emergency hospital admission than younger people.

 

Worryingly the study highlighted that 11% of emergency lung cancer diagnosis patients, 49% for bowel cancer patients, survived for at least a year compared with 42% of those receiving a doctor’s referral regarding lung cancer and 83% for bowel cancer.

Angela Clarkson

A number of rationales are put forward as to why older people present later than younger people. These include inability to access their doctor, relating pain and symptoms to other ailments, low mood, and lack of symptom awareness or access to accurate information. Whatever the reason surely we need to know. We are all aware of the importance of early diagnosis and thus understanding why older people are more prone to late diagnosis warrants further research. As Ghandi said “A nation’s greatness is measured by how it treats its oldest members”. I think we are great, let’s prove it.

 

To read the study in detail click here

Angela Clarkson, Sefton Pensioners Advocacy Centre

We’re sharing information!

Pat McCarthy, Manager of Knowsley Pensioners’ Advocacy & Information Service (KPAIS), tells us about the benefits of sharing information:

As a Cancer advocate for KPAIS I am keen to meet with others to inform them of the work we do and just how invaluable this project is to offer support to anyone over 50 who has been affected by cancer. In recent months I have been out and about learning and sharing and gaining information, and handing out our leaflets and talking to anyone who will listen!  I am always amazed at just how interested and well received our information is, when people hear about our services and how we can provide support.

With a colleague from Sefton Pensioners Advocacy we set up a stall at Aintree University hospital in their elective care centre. This was very busy with patients and medical staff and the Macmillan information centre and our information was well received.

I also attended a very interesting talk on the new Clatterbridge cancer centre being built in Liverpool which will be so beneficial in the Northwest.

Val McGregor, cancer advocate and Pat McCarthy, KPAIS Manager

In June, the Macmillan information officer for St Helens and Knowsley invited us along to St Helens hospital to be part of an event they were hosting which enabled us to share our wider borough partnerships with clinical staff from a hospital in Surrey.

It has been a very busy and informative few months, but the knowledge and new working partnerships gained will be very useful going forward in delivering our services.

Pat McCarthy, KPAIS

Pat Wallis – My Cancer Journey and How It Led Me to Volunteer For SPAC

I was diagnosed with breast cancer 9 years ago and underwent lumpectomy, chemotherapy and radiotherapy.

I cannot fault the treatment I received from Southport Hospital, in association with Clatterbridge. The breast cancer specialist nurses were wonderful and very supportive and informative. However the health professionals can only give you so much help, you need the support off others to help you cope.

Entering the world of cancer and going through the treatment pathway you experience a roller coaster ride of emotions. Initially there is the shock of diagnosis, with questions such as how advanced is it? Has it spread? These questions can take time to answer as there are tests to undergo. It is hard to explain to someone how stressful it is waiting for the results and to find out what treatment you will receive. You certainly need the help of someone to go through this with you. At appointments you may hear what is said but not take it in and thus having someone else there, when you see the cancer specialist, can make a significant difference. Once you know the treatment pathway you are going to receive there are many other concerns. If you are going to have chemotherapy you feel very apprehensive. Much of what you hear about chemotherapy tells you how awful it is. You wonder how ill will I feel, am I going to be very sick, will I be able to go out, what will it be like without my hair, will I suit my wig.

Hospitals can be very daunting places, even if you are confident and not afraid. I remember waiting in a cubicle with an unflattering gown on wondering if I had been forgotten. Once you are on treatment you may still have questions to ask the cancer specialist. It helped me to make a list and have someone accompany me to the specialist or my treatment.

Pat Wallis

If you are still working there could be financial concerns. You may be off work a long time and may need support in identifying your rights re sick pay and any benefit entitlement. I was fortunate in that the company I worked for paid me full pay throughout but this is not the case for everyone.

When you are on treatment you feel secure, as you are seeing health professionals regularly. However once you have finished treatment you can feel as though you are alone and have to start adapting to life again. However you still have the stress of check-ups and learning to live as a cancer survivor, which can be extremely frightening. Another hurdle you may have to overcome, if you are still working, is your phased back to work and you may need help to explain things to your employer.

My own experience of undergoing cancer treatment was very positive and as I have stated I cannot fault the treatment I received. I tolerated chemotherapy well and it was not an awful experience for me, I only missed going out for one day. When I lost my hair there were some benefits to wearing a wig, no bad hair days and I saved a fortune in shampoo. I was lucky that I had no financial problems. Throughout my treatment and after I was extremely lucky to have a supportive network of family and friends around me. However I recognised that there would be some people without family or friends to support them through the journey.

I decided to volunteer for the Cancer Older People and Advocacy project with Sefton Pensioners’ Advocacy Centre as I felt I could use my experience to support others. I recognised that my experience enabled me to support people, with cancer, from a standpoint of understanding the issues and concerns they were experiencing. I know that I could not have managed without the support of my family and friends and therefore understand how important it is to have someone else on your side. Having recognised the difference that support made to me I wanted to be that person for others. I enjoy what I do and the difference it makes. Given the choice to volunteer again I would still make the same decision and would encourage others to think about the positive impact they can have by offering their time to volunteer.

Pat Wallis
Peer Volunteer Advocate
Sefton Pensioners’ Advocacy Centre (SPAC)