The Big Conversation

Every year in May, Dying Matters and its coalition members host an Awareness Week, which gives an unparalleled opportunity to place the importance of talking about dying, death and bereavement firmly on the national agenda.
It’s Awareness Week this week and it runs from 9-15 May with the theme ‘The Big Conversation’.

Did you know that research carried out during last year’s awareness week discovered that:

• 71% of the public agree that if people in Britain felt more comfortable discussing dying, death and bereavement it would be easier to have our end of life wishes met
• Just 35% of adults said they had made a will
• Just 27% had let someone know their funeral wishes
• Just 7% had written down wishes or preferences about the care they would want if they couldn’t make decisions
• Just 18% had asked a family member about their end of life wishes

Our colleagues at Dorset Macmillan Advocacy are supporting Dying Matters week. Their display stand is promoting Advance Care Planning and the Cancer Older People and Advocacy service in Christchurch library all week.

You can join in The Big Conversation by looking out for and attending local events.

• You can also follow Dying Matters on Twitter, Facebook, LinkedIn, YouTube and Pinterest. 
• You can Tweet about it, always including the hashtag #BigConversation.
• You can also join in the #BigConversation on Twitter. Between 1-2pm GMT every day of Awareness Week Dying Matters will be hosting a Tweetchat on a variety of topics relating to dying, death and bereavement – and they’d love you to join in. Find out more. 

To find out more and see how else you can support The Big Conversation, click here

Marie McWilliams, National Development Officer, OPAAL

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Advocacy is a serious business …

Today Pat McCarthy from KPAIS tells us about Advocafe:

Advocacy is a serious business…..

Except when it’s not!

Here at KPAIS we have been trialling a new initiative for older people in Knowsley.  We’ve called it Advocafe. It’s a way of getting older people together in a social setting to encourage peer advocacy and peer support. Ideal for our Cancer, Older People and Advocacy project.

So, over a cup of tea and a French Fancy we’ve shared information on advocacy services and health prevention ideas.  And we’ve asked all the people who attended what was important to them.  What do they want information about?  What would they like to see in these sessions?

Within 2 weeks new friendships had been formed, lifts were being given, wool was being shared.  And we were gathering really useful information about what older people wanted themselves.

Within our sessions we had all the information available about our Cancer Older People and Advocacy Service with the Every Step of the Way Books.  One woman told us about an experience she’d had many years earlier after a cancer diagnosis “I could have used someone like you back then!”  She was happy to share her experience with her table and she helped others to understand how the Cancer Older People and Advocacy service can help when you feel you need support.

One of our sessions brought in the cancer screening officer and it was so much easier to talk about bowel screening while we were all together, having a laugh, making it less embarrassing (one of the key reasons why people don’t talk about it).  And at another session we brought in the Ivan – Knowsley’s own cancer information bus.  Blood pressures were taken, advice was given and people felt supported and reassured that they could access this information.

We made Christmas cards (nothing like being prepared …) and gift boxes. This session was wittily titled ‘Advocrafts’ by one of our Sandwell colleagues!

We made advocacy approachable and we’re now looking forward to taking our Advocafe out to the rest of Knowsley later in the year, with a steering group formed of our first attendees.  It’s such a good vehicle for taking our Peer Cancer Advocacy out into the community and hopefully reaching a wider group of older people.

Pat McCarthy, KPAIS, April 2016

Be more challenging in involving patients

Bob Smith, volunteer advocate, and Kathleen Gillett of Dorset Macmillan Advocacy attended the recent ‘Dorset Cancer Alliance 2016 and Beyond’ conference.

The Dorset Cancer Alliance (DCA) comprises the three Dorset NHS Foundation Trusts, the Dorset Clinical Commissioning Group and the Dorset Cancer Patients Group. The other volunteers who attended and brought the patient perspective were Paul Grant, Trustee of Living Tree Bridport, and three members of Dorset Cancer Patient Group including group chair Emma Willis.

Emma (who is also Director and Founder of Shine Cancer Support) made a presentation on Improving Cancer Patient Experience.   Emma concluded ‘we need to be more challenging and more brave in involving patients at higher levels, ask for more from patient representatives, ask the question ‘How can I utilise the experience of patients to help with this?’ aiming to build strong and inclusive patient involvement in cancer services.

Emma Willis and Bob Smith

The Dorset team for Macmillan Cancer Support was there. Paula Bond, Macmillan Development Manager, has been instrumental in arranging funding for several services (including the advocacy service) and research/scoping projects locally, and Tracy Street, Macmillan Involvement Coordinator, has given capacity building support and guidance to Dorset Cancer Patient Group and to the independent cancer self help and support groups.

It was a full afternoon which included presentations from clinicians, commissioners and representatives of the Wessex Strategic Clinical Network.  We considered the current situation in Dorset and related it to the Wessex and the National Cancer Strategy.  Another factor in Dorset to take in to account is the current Clinical Services Review by the CCG.

Breakout groups discussed the different stages of the cancer journey and priorities for improvement.  One group focussed on patient experience and chose ‘Communication’ as the main priority: Both ‘how people are communicated with’ and ‘what information is communicated’.  We heard an example of a patient receiving their diagnosis in a way that left them both shocked and confused.  Macmillan GP Lavina Sakhrani-Clarke was interested to discuss the idea of letters from secondary care clinicians traditionally sent to GPs actually being addressed to the patient instead and written in layman’s terms. The GP would still be copied in and would, she felt, have a better chance of understanding the content.

Paul Grant and Bob Smith

Kathleen explained to the discussion group how volunteer advocates can support people at appointments and in understanding the content and implications of the letters they are sent.  Some advocacy partners that we have supported in Dorset have told us they were afraid to read their letters or printed information, keeping them tucked away out of sight, until they had their advocate with them to discuss the contents.

Kathleen Gillett, Dorset Macmillan Advocacy 

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)

 

 

 

Linking with local befriending services in Bournemouth

The team from Dorset Macmillan Advocacy at Help and Care, Jo Lee, Senior Advocate and Kathleen Gillett, Volunteer Coordinator, recently shared challenges and solutions with colleagues from local volunteer befriending services at The Grove Hotel in Bournemouth (a retreat for cancer patients and those with serious illness) at the invitation of Anita Rigler from Macmillan Caring Locally.

Volunteer advocacy and volunteer befriending schemes are both models of peer support although they differ in several important aspects and the scope of advocacy support is, I would argue, considerably wider.  The mechanics of providing a good experience for volunteers through good practice in recruiting and training, matching and retaining are however very similar.  For both roles volunteers require highly developed listening skills and an awareness of the importance of the boundaries of the role. A good discussion was held on supporting volunteers when advocacy partnerships or befriending matches are ended.

L to R Carol Stevens of Faithworks Wessex – Compass Project, Anita Rigler of Macmillan Caring Locally, Jo Lee, Macmillan Senior Advocate at Help and Care, Jan Childs of Christchurch Angels, Claire Bridges of Dorset Mind

Having a good understanding of the differences in our services will enable us to signpost and refer on to the most appropriate source of support. We are opening our next volunteer induction training day to the befriending coordinators to give them an indepth understanding of the scope of peer advocacy. The new networking group plans to meet twice a year.

Kathleen Gillett, Dorset Macmillan Advocacy

 

Having two jobs is interesting…

Juanita Williams, volunteer coordinator at Sandwell Cancer Older People and Advocacy (SCOPA) writes about her two-job existence:

As volunteer co-ordinator at Sandwell Cancer Older People and Advocacy (SCOPA) I work here two days a week. The other three days are spent at Rights and Equality Sandwell as Project Co-ordinator for a Heritage Lottery Funded (HLF) oral history project called “Where’s our spake gone?”

Having two jobs is interesting. Remembering which keys, phone and ID badge to take out often gets confusing (especially at my age) but wearing two hats when networking at meetings has its benefits.  With this in mind I went along to talk to a Cancer Support Group run by one of our Local Cancer Champions Board (LCCB) members.  Although three of the women were interested in joining us as Advocacy volunteers; health, work and life in general got in the way and to date none of them have joined us – yet.

Juanita

With my HLF hat on I went back to their group this week with one of the artists we have commissioned to work on the project. Mandy Ross is a poet and is creating work for our project based around Black Country dialect and food.  She read some poetry to the group and then asked them to reflect on their childhood and try to write down some of their memorable food stories.  This session normally lasts for an hour, on this occasion they stayed for almost two.

It was lovely to hear other people’s memories and the laughter resulting from their tales.  We have a saying in the Black Country that you can eat everything on the pig “but the squale” (his squeal!).  It would seem that this group remembered vividly the smell of tripe boiling in their grannies kitchens, eating raw rhubarb dipped in sugar, toasting pikelets (crumpets) by the open fire, popping peas out the pods and chobbling on Teddy Grays suck (sweets to you).

barley sugars

pear drops

aniseed

All in all, it was a great session and Terri Rutter, our LCCB member, thanked us for including them in the project and said what a breath of fresh air it was for the group, who for obvious reasons, are not always in the most cheerful of moods.  If you are interested in our project, go to www.ourspake.co.uk

Incidentally, if you listen to the Black Country nativity you will hear a member of Sandwell Advocacy staff and two of our volunteers! That’s what I call making the most of having two jobs!

As we say in the Black Country – Tarrabit!

Juanita Williams, SCOPA

People were soon making friends and having a chat over a mince pie…

In today’s post Laura Thomas of Age Connects Cardiff & the Vale tells us about Carols and mince pies:

As a project that covers Cardiff and the Vale we wanted to plan something informal in Llantwit Major that would bring people together on a cold winter’s morning, and would reach those living in some of our more rural areas.

We decided on a Christmas themed event with mince pies, drinks and a raffle with donations from the local Co-operative and Filco supermarkets and Sainsbury’s in Cardiff (Age Connects Cardiff & the Vale is currently their charity of the month). This enabled us to offer all refreshments and the raffle prizes for free.

Information on our work and some prizes for the raffle

We opened the doors for 10.30am and after a short wait the room soon started to fill up. Some came with friends and others were dropped off by a relative or came alone. The atmosphere was upbeat and people were soon making friends and having a chat over a mince pie.

Angela, our independent advocate and Alice the volunteer co-ordinator spent the morning talking to the guests, explaining more about the Cancer Older People and Advocacy Project. We had our leaflets to give out and the OPAAL short film ‘Older People Affected by Cancer’ played in the background. Our volunteers were busy; Linda ran the raffle and Jeff took photos of the day.

Tenovus choir

We invited Tenovus Cancer Care Choir to come and sing some carols for us. Their singing was amazing and they really helped to get everyone in the Christmas spirit and had everyone singing along. It also gave us an opportunity to talk to those in the choir about the Cancer Older People and Advocacy project and they in turn were able to speak to some guests about the great work provided by Tenovus. All in all it was a great example of how working with another third sector organisation can benefit those that we support.

Laura Thomas, Age Connects Cardiff & the Vale

We celebrated our volunteer achievements at a Christmas lunch

In this post Jaunita Williams, Volunteer Coordinator at Sandwell Cancer Older People and Advocacy (SCOPA), tells us about a special festive lunch:

In December 2015 we invited our new Sandwell Cancer Older People and Advocacy (SCOPA) volunteers to join staff and management board members for Christmas lunch.
We chose a local pub and sent out the invitations with the menu choices. We were delighted they were able to join us in celebrating our year’s achievements. Our cancer advocacy volunteers were able to chat with everyone about their plans for the upcoming holiday period and we reflected on their contribution to the project. We had an enjoyable festive lunch and lots of laughs!

The boss in festive hat

Viv

Sherry

Jodie

I have since been able to catch up with four of our volunteers and I asked them to define what it was that motivated them to get involved with the project and what they felt they had gained from volunteering. These are their responses.
• Sherry – as a breast cancer survivor and retired nurse I felt I had so much to offer to other people going through what I went through. I didn’t want to wait, I knew I was ready to start volunteering and I was given an advocacy partner quite quickly. I’ve supported her through a temporary displacement move and attended some hospital visits. I am really happy with how it is progressing and am looking forward to another partnership in the New Year.
• Andy – Recent circumstances out of my control meant I was wasn’t able to keep up my weekly visits. SCOPA staff supported me and attended meetings that I couldn’t go to. It’s all done at my pace and I feel I am making a difference and am appreciated. All the staff at SCOPA are helpful and I drop in whenever I am passing.
• Viv – I was placed with my advocacy partner within weeks of the training. As a survivor myself I knew how lonely it can be even when you have your family around you. I see my advocacy partner about once a week and we chat, he has lots of family and friends but they don’t know what’s on his mind. We find it easy to talk about his treatment and issues.
• Jim – I worked as a manager of a residential home for years and pretty much knew what to expect. SCOPA set up my advocacy partnership back in November but I have still to meet my partner. Her circumstances have changed quite quickly and she is now in a hospice, It is what it is, this is the nature of the work we do. Referrals take time to settle and I’m not surprised with how it’s going. Fortunately Sandwell Advocacy found other work for me to do, interviewing residents and family members in local homes. This is a really good use of my time and I feel that Sandwell Advocacy are allowing me to use my skills and experience to their best advantage.

As we are now well into the New Year and back at our work we are happy to have recruited two further volunteers and we hope that our “old hands” will be available to talk to the new ones and be able to share their experiences and offer advice and support in addition to the full training package they will be attending.

Juanita Williams, Volunteer Coordinator, SCOPA

OPAAL trainers unleashed in Dorset

Malcolm joined Dorset Macmillan Advocacy as a Peer Advocate early in 2015. With personal experience of cancer and of training people in a commercial environment, we were pleased to welcome him to the team.

When it came to looking for candidates to put forward for the OPAAL/Sanofi Train the Trainer project, Malcolm was a natural choice.

Here Malcolm relates his training and also his first experience of putting it into action when he attended a Macmillan Bitesize event at Dorchester County Hospital in November 2015.

“Initially as volunteers we were invited to a training session both to develop our skills in delivery and also to share our experiences of bereavement and cancer at first hand; both what you yourself had experienced and also the effects cancer had had on service users you had encountered whether on their health/wellbeing, employment, relationships and a new attitude to life in general.

Cancer had figured as a central issue to a particular client that I had been supporting; coming to terms with the treatments and after-effects and how relatives, friends and work colleagues viewed the client pre and post treatment.

The training aimed to prepare volunteers for speaking to health care professionals about both personal and client experiences of cancer and recovery.

The first event I attended as a Trainer was held on the 16th November 2015 at Dorset County Hospital in Dorchester.

The objective was to provide a group of health care staff with first-hand experience of the viewpoints of volunteers supporting advocacy partners.

I shared a story about an advocacy partner who was recovering from cancer and wanted to return to work. We spoke about how I worked with her to understand her requirements and what she would ideally prefer to do, as her work was a physical post. Together we produced a strategy that she was able to present to her employers.

The talk appeared to be well received by the audience, possibly providing them with food for thought.

Feedback gleaned from the event included positive comments about how useful it was to hear from previous patients and also to have heard the advocacy stories direct from the Peer Advocates themselves demonstrating how powerful it is to hear evidence from the people not only who have personal experience of cancer but who have come forward to support others using their own experience and skills.”

New National Cancer Director outlines future vision at London conference

“We want to have the best cancer care. Anywhere.”
Those were the words of new National Cancer Director Cally Palmer CBE as she addressed attendees to the Britain Against Cancer conference hosted yesterday in London by the All Party Parliamentary Group on Cancer (APPGC).
The annual event, which featured a keynote speech by Secretary of State Jeremy Hunt and was also attended by NHS England’s National Clinical Director for Cancer Professor Sean Duffy, is one of is one of the largest conferences of its kind in the UK.
Miss Palmer, who is Chief Executive of the Royal Marsden Hospital NHS Foundation Trust and joined NHS England as National Cancer Director in November, praised the vision set out by the Independent Cancer Taskforce and outlined some of the ways she will lead implementation of the recommendations of its report.
Miss Palmer said: “Back in September NHS England announced a new ‘Cancer Vanguard’: three sites which will come together to trial new ideas and approaches to the commissioning and provision of cancer services, including testing capitated budgets from April 2017. We expect this to begin to teach us about what works and what doesn’t almost immediately.”
“In response to the recommendation by the Taskforce report, we’re also establishing Cancer Alliances across the country from April next year, which will be the cornerstone of delivering changes at a local level.”
Miss Palmer announced a new Cancer Transformation Board to lead the rollout of the other recommendations of the Taskforce report, and a Cancer Advisory Group, chaired by Harpal Kumar, Chief Executive of Cancer Research UK, to oversee and scrutinise their work.
Miss Palmer also presented the first prototype of a new Cancer Dashboard to measure progress with a focus on incidence, survival rates, patient experience and quality of life for patients.
“From April 2016 every CCG will be able to see their own data in this format and will be able to benchmark themselves against other CCGs.
“This was the first of the 96 recommendations that the Taskforce gave us, and we have made it a priority. We all need to be clear what we’re working towards, and a unified set of measures is fundamental to this.”
OPAAL welcomes these initiatives and looks forward to collaborating with Macmillan on their roll out, in particular discussions around influencing the new Cancer Alliances across the country from April 2016.