Emotional support needs are growing

What information and support needs matter most to people affected by cancer? Today Kathleen Gillett of Dorset Macmillan Advocacy, (DMA) tells us about changing needs and a greater requirement for emotional support:

Cancer Information and Support Services (CISS) are changing – at least that is the finding of a recent study of the Macmillan CISS which has involved a partnership with the Mental Health Foundation.  A workshop at last autumn’s Macmillan Professionals Conference presented the findings of research into the role of provision of information and support.  Macmillan CISS services are very varied with some operated by teams of staff and volunteers in large purpose built facilities, often on hospital sites, and others provided by a single part time worker.

Dorset Macmillan GPs Dr Paul Barker and Dr Simon Pennel with Kathleen Gillett of DMA

The trend has been for people affected by cancer to be less in need of information and more in need of emotional support. A YouGov survey found that 83% of patients said that ‘being listened to’ is the most important thing.  If people are seeking more emotional support how are the CISS services reflecting this change and how are the service providers (staff and volunteers) themselves enabled to give this support without a negative impact on themselves?  Answers to these points continue to be developed by a working group of Information Managers within Macmillan.

Kathleen Gillett

Discussions during the workshop revealed a range of interpretations as to what constitutes emotional support and how to offer it.  A weekly coffee morning style drop in could offer low level psychological support in the view of one participant from a community palliative care team.  Ensuring that ‘all the patients have my phone number’ was seen by a nurse as being a way of providing emotional support. Another participant noted that patients with identified needs may sometimes decline a referral to psychological support because of unfamiliarity with the term and fear of the word ‘psychological’.

I made sure to explain to the participants of my discussion group the way in which peer volunteer advocacy can provide low level and ongoing emotional support. Not only can advocacy partners ventilate on occasion and be sure of being listened to but they can build a trusting relationship over time with their volunteer and know that they will not be judged as they share their worries and feelings.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy

Advertisement

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

Driver, moral support or something more?

Kathleen Gillett from Dorset Macmillan Advocacy looks at what an advocate can and will do to support an older person affected by cancer:

When I explained to someone recently that peer volunteer advocates could accompany the person they are supporting to medical appointments they remarked ‘Like a befriender then?’ ‘Yes and no’, I replied.

The advocate, in addition to walking in the door with the patient (and carer) can do any or all of the following:

• Ensure the person has remembered the appointment, has satisfactory transport arrangements and knows exactly where to go
• Ensure the person knows what the appointment is for and who they are going to see
• Ensure the person has thought about the previous appointment and prepared for this one by thinking about what they would like to get out of it and writing down any questions they would like to ask
• Prompt the person to ask questions they have prepared and, if needed, ask the questions on the patient’s behalf
• Monitor the person’s understanding of any terminology used and ask them if they would like fuller explanations
• If the person is asked to make a decision about treatment options check whether they feel ready to do so and if not how much time is available
• Take notes during the appointment to make a written record for the person to refer back to later
• Make sure the person is clear at the end of the appointment what the next step will be
• Have a cup of tea while waiting for transport home
• Later on run through what happened at the appointment to see how the person feels it went, whether they felt comfortable and were treated with dignity and respect
• Discuss any treatment and care options and their implications and whether more clinical information is needed
• Agree with the person if any new and immediate needs have arisen and what they would like to do next.

I was reminded of reading Ken Worpole’s obituary of the hospice architect, Ian Clarke. Clarke ‘believed passionately that hospitals for the dying should be welcoming, reassuring places and he spent his career designing uplifting spaces for palliative care’.  Clarke wrote of healthcare environments; ‘Why can we not get away from the ubiquitous ‘no-place’ hospital corridors that we are so used to?’

 

I agree that environment is important and have visited well designed hospices and cancer centres that clearly enhance wellbeing. However, for me when I go for the first time to a new place or have an appointment of significance in a familiar place, feeling well prepared and having a trusted person to go with me is equally important. This, coupled with the friendliness and manner of the staff that I meet there, will make a bigger impact on me than the surroundings in isolation.

Kathleen Gillett, Dorset Macmillan Advocacy

Understanding and motivation from another angle

Kathleen Gillett from programme partner Dorset Macmillan Advocacy writes in the second of two posts about how our peer advocates can support older people affected by cancer achieve voice, choice and control in their cancer journey:

Whilst getting to grips with the notions of ‘health literacy’ and ‘patient activation’ that I read about in a report by Macmillan Cancer Support I went on to think about how health literacy and patient activation might interact and found it easiest to use a graph.

So, person A has a high level of health literacy but a weak level of patient activation.  They know and understand a lot but lack motivation to move forward.  Person B has very strong patient activation but is hampered in decision making by lack of knowledge and poor understanding.  Person C has a balance represented by their position on the dotted line.  Their level of health literacy and patient activation are sufficient to allow them to move forward without one impeding the other.

What can independent advocacy support potentially do for persons A, B and C?  Provide emotional support to build confidence and source practical help to reduce barriers thus enabling person A to strengthen their patient activation (and move closer to the dotted line). Source information in an appropriate format and create opportunities for discussion to check understanding with person B thus increasing their health literacy.  Help person C to maintain their balance and grow in both knowledge and confidence throughout their journey (travelling up the dotted line).

There’s no right place to be on this graph, just as there’s no single right way to handle a cancer diagnosis.  In reality persons A, B and C will have their own views on what help they need and the role of advocacy is to empower them to express those views.  They can be supported to move in a particular direction only if they have expressed the wish to do so.

What of people with both low health literacy and weak patient activation? Older people may be more likely to be in this situation with the risk of low general literacy from limited educational opportunities, having to contend with multiple long term conditions that sap time and energy and having only patchy social support networks.  Tailored empathetic peer advocacy support that comes to them at home and stays with them for as long as needed can nevertheless help them to achieve voice, choice and control on their cancer journey.

Kathleen Gillett, Dorset Macmillan Advocacy

Advocates relish in the words “not possible”

Lizzie Sturm gives us the low down on what’s been happening recently at project partner Advocacy in Barnet:

We seem to be spending so much time recruiting! The last two months have seen us interview for a Volunteer and Training Co-ordinator, a Project Manager as well as Volunteers for the Barnet Macmillan Advocacy Project. I hope that people will get to meet Tasneem Goheer, the new Volunteer and Training Co-ordinator who started at the beginning of January over the next few months. The calibre, passion and dedication of volunteers that join us never fails to humble me.

As a Macmillan partner, we positively benefit from both the learning of COPA projects sharing their experiences at Board meetings as well as directly receiving the support and training of Macmillan. We had our “induction” last week with the Macmillan Involvement Coordinator Raj Bhattacharjee, informing us of what we can access as well as their expectations.  All staff on the Barnet Macmillan Advocacy Project will be attending their formal new professionals’ induction day in due course. We’ve also been introduced through OPAAL to our mentor organisation Dorset Advocacy, a really brilliant idea.

Despite the changes, Barnet Macmillan Advocacy Project is making a difference and the relief that advocates can offer is palpable. However, so many of the issues that we have dealt with can end up being a race against time. Betty Zulu is the Barnet Macmillan Senior Advocate currently supporting Mr P, who has terminal cancer (final stages) with housing issues. His wish is to transfer the tenancy in his name over to his children as he is very worried about leaving them homeless. The housing department are of course adamant that it is not possible to transfer tenancy to children. Advocates relish in the words “not possible” and Betty has been combing through tenancy and transfer laws to challenge this. Mr P has already noted the difference at the housing department since informing them he has an advocate. Betty has now identified that transfer to children living at home can be allowed so a positive resolution and peace of mind to Mr P is on the horizon. We hope that this will be completed within his lifetime. Betty says “I found it very important to provide support to Mr P as his health is quickly deteriorating. He was becoming very breathless even as we spoke. His prognosis is not very good. I feel very gratified that I am able to provide support for Mr P as he informed me that he had been to so many other organisations but unable to get any help”.

Lizzie Sturm, 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

Cancer can be the loneliest place – reach out to a friend or loved one with cancer today

I’ve just come across the newest short film from our partner Macmillan Cancer Support and really feel the need to share it. It graphically illustrates the all encompassing loneliness that cancer can cause.

 

This is why we recruit, train and support older people who’ve been affected by cancer to become peer advocates. Their experience of “what it’s like” is a powerful way to reach out and offer support to others who’re now experiencing the same thing. If you know someone affected by cancer, please do reach out. It can be difficult to find the right words sometimes but just trying can make a difference.

Marie McWilliams, OPAAL

The roller coaster: don’t be on it alone

I’ve been involved in one capacity or another with the Cancer, Older People and Advocacy programme from its inception. I’ve always thought I understood the value of advocacy and having worked with older people for more years than I care to remember I believe I have some understanding of the issues facing older people.

However, I never really had an understanding of the impact of cancer. That is, until Christmas Eve. That’s when my 23 year old non-smoking, teetotal son was diagnosed with advanced mediastinal germ cell cancer. He had been suffering from a bad cough for a number of weeks and his GP had given him antibiotics to clear up what he thought was a chest infection. When that didn’t work he did some blood tests which showed hyper-thyroidism which we later found out was a symptom of the cancer. A trip to hospital on Christmas Eve was intended to help provide intravenous medication to help the thyroid problem because my son kept being sick and was struggling to keep anything down.

One chest x-ray later, followed quickly by ultrasound and CT scans quickly indicated to us that there was more wrong than anyone was currently telling us. When we were taken to a side room to talk to the consultant, who up to this point we’d never met, we had that feeling of all definitely not being well. And then it struck – the fear!

That’s kind of the hardest thing to live with – the constant, nagging, all consuming fear. So, ever since that meeting in the side room with the consultant we’ve been on the roller coaster. The one familiar to all who are affected by cancer. One minute going up, the next down with a lurching in the stomach and the desire to scream.

Whilst we’re dealing on a day to day basis with what comes after that diagnosis I’m at all times very conscious that we have each other. So in spite of that diagnosis, we’re lucky. We’ve got a tight knit family. We support each other, help out by being at clinical meetings and appointments, take notes, ask questions, plan what we’ll ask next, help with the form filling, everything that we can do, we do. But what about those who have no-one to provide this type of support?

That’s where peer advocacy support comes in and can make a massive difference. The fact that our peer advocates have been there, got the t-shirt, read the book and seen the film really does help. They understand and that’s very important. So, if you’re currently on the cancer roller coaster we’re on it beside you. If you need support please do ask for it. If you’re able to provide that support don’t be shy. Your support could make a world of difference.

Marie McWilliams, Nastional Development Officer, OPAAL

Our First Training Session with our Peer Support Volunteer Advocates at Age Connects Cardiff & the Vale

Angela Jones and Joanne King of Cardiff Cancer, Older People & Advocacy project recently carried out their first training for volunteers. There were three volunteers who were very keen and engaged well with the subject matter and the trainers.

An evaluation form was handed out at the end of the second day and completed on site.

 

The evaluation form encompassed four questions that had a scale of 1-5 (1 being totally disagreed and 5 being totally agree). We are pleased to say that we scored 5 on all the questions which were:

1. Found the course interesting and productive.
2. The course has met my expectations.
3. I felt encouraged and able to contribute.
4. I am satisfied on how the course was run.

 

Joanne, Margaret, Juliet, Karla and Angela

At the end the volunteers were invited to give general comments which included:

“Examining the various stages of the cancer journey was useful as everyone has a different experience.”

“Excellent in every way.”

“The information given was clear and well delivered and I was made to feel valued and supported.”

“The scenarios made me really think about how I would handle a particular situation.”

“Because I work it would have been better for me if the training was covered in one day.”

It is always difficult to gauge how a first training session will evolve and all of us are on a constant learning curve but it was a great experience for both trainers to be part of that process.

Laura Thomas, Age Connects Cardiff & the Vale

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