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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Today we hear from Emily Brown, Interim volunteer manager and independent advocate at Dorset Macmillan Advocacy:

I am new to Dorset Macmillan Advocacy service, not to Dorset Advocacy, but I am a newby on this project.  I have been blown away by the dedication given to it by staff at Help and Care and Dorset Advocacy, the members of our Cancer in Older People Development Group and of course by all of those volunteers who give their precious time and share and draw from their own experiences in order to support those that need it.  I have come at an exciting and challenging time as we strive to illustrate the benefits, positive outcomes and impact of the service on the people we support…we know the impacts because advocates see this first hand, but how do we convey its importance to others when times are tough, and how do we show that advocacy can also be a benefit to the NHS?

Jenny Purcell and Karen Piggott of Dorset Advocacy were invited to speak at the Clinical Commissioning Group’s (CCG) lung cancer pathways information day last month.  They presented to a number of professionals on the benefits and impact of advocacy.  We often talk about the benefits of advocacy for the individual which is, without doubt, the most important thing but what is not always considered are the benefits of advocacy for the service providers.

We have recently received an independent evaluation of our service which illustrates exactly this.  Essentially what the evaluation does is highlight how the introduction of advocacy support can help to ensure that the choices that the person makes are well informed, that the individual has a consistent person throughout their journey, and that as a result the input of advocacy can help the process to move more swiftly, advocates can ensure that people can keep to their appointments and that the individual’s other concerns are being addressed allowing them to focus on decisions about treatment. 

In fact there was a recent example with one of our cases when a health professional at Dorset County Hospital postponed an appointment by a few days in order for an advocate to be able to meet their partner and attend this appointment with the patient.  This action alone indicates to me that this health professional recognised the value in having an advocate present to support at the appointment.

Our work continues with the CCG in Dorset to initiate the introduction of advocacy as a recognised standard of good practice on the lung cancer pathway. We are not there yet but the evaluation along with our Case for Support will, we hope, enable us to convey the impact of advocacy and put together a pilot scheme that can illustrate the values of the service for the service providers as well as those who receive it.

Emily Brown, Dorset Macmillan Advocacy

Patient experience can improve the lung cancer pathway

Today Kathleen Gillett of Dorset Macmillan Advocacy tells us about an online survey on what matters most for people affected by lung cancer and their carers:

People can use their experiences of health and social care, good or bad, to help make things better for others in the future. In health this is called ‘patient experience’ and the patient point of view is often sought through ‘patient engagement’ methods such as events or surveys.  Patient groups and voluntary organisations sometimes call this ‘user involvement’.  I’m still getting to grips with these concepts and it helps my understanding to try to explain them in plain English.

A national survey of cancer patients takes place every year called the National Cancer Patient Experience Survey and the latest survey should be published in the next couple of months.  It contains useful data right down to individual local hospital Trust level.

There is currently a survey open specifically for lung cancer patients and carers (as well as a version for Health Professionals).  The survey is being carried out by the UK Lung Cancer Coalition (UKLCC) which is a coalition of the UK’s leading lung cancer experts, senior NHS professionals, charities and healthcare companies.

Established in November 2005 to help to bring lung cancer out of the political, clinical and media shadow the organisation’s long-term vision is to double one year lung cancer survival by 2015 and five year survival by 2020. The ambition is underpinned by four key objectives including; to empower patients to take an active part in their care.

The report of the previous UKLCC survey which took place in 2013 Putting patients first: Understanding what matters most to lung cancer patients and carers will serve as a baseline to compare with the results of the new survey as many of the questions are similar.  The Foreword to that report said the survey had ‘highlighted the need to promote and embed a more patient-centred approach to lung cancer care.‘

At Dorset Macmillan Advocacy we are looking at how we might better support people affected by lung cancer.  We are talking to colleagues in the Health service about providing advocacy support to patients with suspected lung cancer to enable them to access the many important tests that they need as quickly as possible.  These tests may take place at different locations and there might be several in the space of a week.

We were recently able to provide an advocate at quite short notice to accompany a person to a scan. The time spent waiting for the scan was usefully spent uncovering concerns and preparing questions so that at the consultation which followed the person was able to be proactive.  We received very good feedback about the effectiveness of the volunteer’s support at this appointment from the patient, the consultant and the patient’s GP.

As an advocacy service we can amplify the voices of the people we have supported to date who are affected by lung cancer by asking if they would like our help to take part in the new survey (it is available online and can be downloaded as a paper document).  We can also ask local Clinical Nurse Specialists for Lung cancer if they are completing the survey and let them know that if they have patients (or carers) who would like to take part in the survey but need help to do so then we may be able to offer support.

The survey is available via the pink coloured bar on the right of the UKLCC home page and the closing date is 27 June 2016.

Kathleen Gillett, Dorset Macmillan Advocacy

 

 

I have gained a lot from her and she has made me stronger just by listening to her

In today’s Volunteers Week story we hear from Audrey one of our volunteer peer advocates who supported Eleanor who had been diagnosed with terminal lung cancer:

Eleanor is a very strong person, she is coping with her cancer as well as keeping her family happy. I really do admire her strength. She has a strong family around her. Although she is sad her two sons will not be around she does have contact with them. She just wanted to sort her house out; she wanted to decorate and renew as she is leaving her house to her daughter. This she was able to do with the extra benefits she was entitled to.

She is suffering with lung cancer and it’s terminal. Her treatment this time around is harsh, she is losing more time to the treatment than she is to the cancer. She has decided she is not having any more treatment unless it will give her more time. I have visited her at home and will continue to do so.

Audrey

She was referred to our service through a relative of mine who knew we did something with cancer advocacy. She was worried about how she was going to manage on the money she had as she had lots of things she wanted to do before the cancer stopped her.

When I first met her I realised we knew each other by sight, but not by name. She was okay with this and so was I. We talked about times gone by when we were both younger and got to know each other quite well. She always asks how I am when I go and visit. She never sits and talks about herself unless I bring up the subject by asking what she has been up to; hospital visits or appointments she is waiting for.

I have gained a lot from her and she has made me stronger just by listening to her. She never feels sorry for herself even when the treatment has her down. She still manages a smile. She has had her money sorted and has done her house the way she wanted. She has had a couple of holidays which is what she wanted. She is sad at the minute, because of the treatment she has lost days. She could have been doing so much if she did not feel so tired. She is pain free but struggles to breathe.

I still see Eleanor regularly to give my support to her through her good and bad days. I am there when she needs me to help her.

 

 

You can read Elinor’s story in full along with Audrey’s view in our publication Every Step of the Way which can be accessed here

 

Marie McWilliams, OPAAL

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

Strange how much irony there is in life!

Lizzie Sturm, Director of Advocacy in Barnet, tells us about her new, personal perspective, of the Cancer, Older People and Advocacy Programme.

Advocacy in Barnet (AIB) are really excited to be the newest OPAAL hub member to become a Macmillan partner. Three weeks ago we held interviews to recruit a volunteer coordinator for the Barnet Macmillan Advocacy Project. The Macmillan Involvement Coordinator (North and East London), experienced volunteer and myself comprised the panel, meeting a range of candidates and spending much of the day talking about cancer pathways. I hope that people will get to meet Alex Pinnick, the new Volunteer Coordinator who starts on 16 September over the next few months.

Strange how much irony there is in life! Within a few hours our conversations about cancer pathways became personally meaningful.  My Mother (in her late 80’s) was diagnosed with lung cancer that evening. We’re now embarking on our own cancer journey with each participant experiencing their own unique impact and place in this.

It’s been a long three weeks with a myriad of emotions experienced and a lot of learning already. At every step of the way, my belief in the value of advocacy support to older people affected by cancer has been absolutely affirmed.

My parents are intelligent, articulate and independent people but they are immensely affected by this scary diagnosis and prognosis as are all the family. The medical team and nursing care have been superb but there are so many, many significant details and ramifications that need to be attended to. I am fortunate to be in a position where I can try to support them. Even as someone “fairly in the know”, there will definitely be times where I will flounder in this.

I can certainly bring in an unexpected and new perspective to the training of our Barnet Macmillan Advocacy Project. As I am sure other projects have encountered, the spectrum of issues that may require advocacy for an older person affected by cancer is enormous and I am delighted that our new Barnet Macmillan Advocacy Project will be able to make a difference.

 

Lizzie Sturm, Advocacy in Barnet

Rosie’s thoughts on the cancellation of her Ablation operation

I am Rosie Young, retired nurse and Cancer Champ for Oxfordshire Advocacy and I have blogged before about my experiences as a patient living with lung cancer.

I just want to share the shock I felt when the consultant phoned to say my Ablation had been cancelled.    It was almost like a mega bereavement process, having been so ‘psyched up’ for this operation.   I felt cheated in an odd way.    In April there was the shock of the cancer coming back and then the long wait for the first operation date finally set in late June which was then postponed due to lack of hospital beds.   And then the wait for a new date in August.   And now the second cancellation and another 3 month wait as it seems that the area they were worried about in my lung has shrunk, my next scan will be in late October.

Rosie

It’s a very strange emotional upheaval to go through.    Everybody is incredibly happy that the possible tumour has shrunk and can’t understand why I am not over the moon. I have had to pretend that I am happy too.   I have been feeling so guilty and conflicted, not wanting to burst the bubble, even with my advocate Linda.   I didn’t expect to feel like that.

I guess I’d like every advocate out there to be really aware of the emotional roller coaster a patient goes through when there is a cancellation of an operation or change to planned treatment.   When this happens you feel like you’ve lost control cos you can’t do anything practical to help yourself.   Really listen carefully and do not make any assumptions or have expectations when this happens.

It seems to me from all the research I have done that no one has really got to grips with the psychological impact of cancer both on you and others around you who are in some ways more frightened than you.

 

Rosie Young, 26.08.15

Lung Cancer Awareness Month – November 2013

November is Lung Cancer Awareness Month.  Lung cancer is the most common cancer worldwide.  With the disease claiming more than 33,500 lives in the UK every year and a shockingly short six months average time between diagnosis and death it is crucial that awareness of this cancer is raised.

Organisations such as The Roy Castle Lung Cancer Foundation strive to raise awareness of this disease.  Awareness leads to greater chance of early diagnosis.  The earlier the diagnosis, the better the chance is of swift lung cancer treatment and the ability to beat the cancer. So help your family and friends realise that smoking, passive smoking and exposure to certain chemicals are risk factors that should be eliminated or reduced.

Keep Calm

How can we do this?  Staying active is the main way!  Going to the gym, dancing, or doing a sport you enjoy will help strengthen your muscles. This will expand your lungs and ensure the blood that is pumped around the body is better able to provide the oxygen the body needs!

You should also stay away from smoking, keep your rooms well ventilated and get any persistent coughs that might arise checked with your doctor.

This is particularly relevant in Stoke on Trent as there is a higher incidence of lung cancer in the population compared to the national average.

Kath Curley

Project Co-ordinator Beth Johnson Foundation