Advocacy services as part of the wider picture of patient involvement

The Dorset Macmillan Advocacy steering group (Cancer in Older People Development Group) met at Lewis Manning Hospice on a sunny day in Spring with the usual packed agenda.

A key discussion topic was how learning from the advocacy services can feed in to local service improvement. We noted how the team of peer advocates from Getting Heard in Oxfordshire had produced a report with suggestions which had been well received by the local Trust.

There were plenty of informed contributors:  Tracy Street, Macmillan Engagement Coordinator for Dorset attended to lead the discussion on user involvement (Tracy had been responsible for patient involvement at the Dorset Cancer Network);  Paula Bull who has joined the steering group has been a part of the Dorset Cancer Patient group for many years;  Lynn Cherrett, Lead Cancer Nurse at Poole Hospital is working closely with the new Dorset Cancer Partnership (DCP) (the local Cancer Alliance).  Together with the DCP chair Lynn is working to create a new Dorset Cancer Patient Experience Group.

Informal discussions after the meeting                                                                                                                   Front L to R Julie Cook, Acute Oncology Nurse, Dorset County Hospital, Rachael Brastock, Macmillan Psychological Support Lead, Genevieve Holmes, Macmillan Coordinator/ Senior Advocate for Dorset Macmillan Advocacy at Dorset Advocacy, Cait Allen, CEO Wessex Cancer Trust
Back L to R Graham Willetts and Charles Campion-Smith

It was agreed that the advocacy service will have a part to play in future local cancer service improvement. People affected by cancer (patients and carers) are steering the service, delivering the service and benefiting from the service.   They have unique insight into how people in Dorset are experiencing the current cancer care pathways which can be usefully added to the views of trained patient representatives.

Bob Smith, peer volunteer advocate and Paula Bull

The group also welcomed Cait Allen, Chief Executive of regional charity Wessex Cancer Trust as a guest. Cait gave an update on the development of services in Dorset including the Bournemouth Cancer Support Centre which offers drop in support.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy (Help & Care)

 

 

 

 

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Mike was terrified of meeting with his doctors, Bob helped build his confidence and gave a voice to his fears

Today’s blog post comes from Ang Broadbridge, OPAAL’s Deputy CEO talking about our latest Older People’s Cancer Voices film.

The COPA programme is complemented by our Department of Health funded Older People’s Cancer Voices project; it’s about amplifying the voices of older people affected by cancer, bringing advocacy to life through the stories of older people who have accessed it, and those volunteers involved in its provision.  I’ve been leading this project for 18 months and we’ve tried to give older people access to a wide range of tools to support them to share their experiences.  I’m really excited about the films we are working on with older people.  Bringing their stories to life and seeing advocacy partnerships on screen draws a focus to the many benefits of advocacy, highlights the impact of cancer for older people and shows the strength of those partnerships.

We work with vulnerable client groups and this has been our first foray into filming one to one with advocates and their advocacy partners.  We wanted to be brave about telling these stories and not shy away from difficult topics, working alongside older people to bring these issues to light sensitively.

Mike’s Story, recently released on our YouTube channel highlights some of the many issues advocates support older people affected by cancer with.  Mike talks about the impact of his cancer diagnosis, how his life was taken over by the thought of cancer and how things changed for him when he was introduced to Bob, his volunteer peer advocate.

Mike was in recovery from alcoholism and had just had a diagnosis of diabetes when he was diagnosed with cancer.  He describes feeling terrified and disillusioned, sometimes suicidal.  Bob was someone he could talk to, someone who really knew cancer, Mike says he feels it is essential “to talk to someone who has had similar experiences”.  Bob helped Mike to feel more confident going for treatment and check-ups, to make decisions and speak to health professionals, something Mike found “terrifying” in the early days of his diagnosis.

Bob helped Mike with a wide range of issues; helping to organise his paperwork including identifying pensions, speaking to HMRC and helping him to complete his tax form, encouraging him in his progress overcoming alcoholism, encouraging him to take steps to pick up the telephone and return to the local project who were supporting him with his recovery after he lapsed following his cancer diagnosis, reassuring him about side effects of treatment, ensuring health professionals were made aware that he could feel claustrophobic in smaller spaces, and at first representing his wishes and needs, later encouraging him to have the confidence to do these things for himself next time.

Bob reflects on how the objective of the partnership, to help Mike to stand on his own two feet and express his wishes, has been achieved and he feels he has learned a lot from Mike too, and the many other advocacy partners he has supported in his role.

You can find out more about Older People’s Cancer Voices by following the hashtag #mycanceradvocacystory on twitter, and by following OPAAL’s YouTube channel.

Sometimes people say they can manage when they can’t; Sometimes people don’t want to be a bother…

In today’s post, Tessa tells us about her first experience of being a volunteer advocate:

I am a volunteer McMillan advocate for Help and Care in Bournemouth, part of Dorset Macmillan Advocacy.  It was by chance that I found this position whilst looking on Google for volunteer positions in and around Bournemouth a couple of years ago.

My first client was over eighty, and had been diagnosed shortly before I met her with breast cancer. She needed help organising hospital appointments and support with coming to terms with a cancer diagnosis late in life. 

Although she had no local relative support and lived alone she had a no nonsense approach to life and a wonderful accepting attitude towards her illness.

As my first partner she was a delight, any nervousness about my role quickly disappeared as she informed me clearly about her needs, moving on quickly to find out about me.  She had the most wonderful stories she wanted to share about her life and was so grateful for me just being there, never mind when I did things for her.

I arranged to take her myself to her first appointment after her operation with the Consultant.  This was a real eye opener, as I had not considered the difficulties involved in taking an elderly person to hospital alone.  Dropping her off at the entrance to the hospital seemed to go well.  She insisted she knew where she was going, and would meet me (after I parked the car) in the department.  So far so good.  Fifteen minutes later when I got to the department there was no sign of her and I began to panic.  She did not in fact have any idea about where she was going and as I rushed around the huge hospital back tracking to where I left her my heart was in my mouth.  Fortunately I found her standing by a lift, telling a kindly orderly that she was looking for me.  He was looking bemused by her and so when I suddenly flew around the corner and she saw me we all sighed with great relief.

Tessa

The meeting with the Consultant went well. Although my partner was elderly, her amazing personality and zest for life endeared her to all.  I had been nervous about whether the professionals would accept me in my role but they were all respectful and accepting of my position.

Following this trip, I made arrangements for the ambulance service to pick her up and if I was required to be there would meet her at the required time.  Certainly it is always worth thinking about logistics and mobility before setting out on expeditions and this was one of my first lessons.

There has now come a point when my partner no longer requires my assistance and so I had to go through the process of letting her know and saying goodbye.

This was very hard, we had formed a great bond, she relied on me to read letters to her and organise appointments but from a cancer perspective she did not really need be to be acting as her advocate any longer.

I understood this but on the other hand I felt great sadness at having to say goodbye to this wonderful, brave woman. 

Over three weeks I prepared her for our ending and on the final day we hugged, we both understood it was at an end but it felt sad and I could see she was a little confused.

 I am grateful for this first experience as a volunteer advocate.  As an advocate you really have no idea what your partner’s needs may be and they can evolve as their treatment and circumstances change.  As an advocate you need to be conscious of this.  For me it is an extremely worthwhile and very necessary role.

Things I learnt:

Sometimes people say they can manage when they can’t

Sometimes people don’t want to be a bother

Sometimes people are more ambitious than they are capable of and need a little help

This has taught me to listen very carefully to what is being said and to try to ensure that my partner feels they can ASK for help and know they are not too much trouble.

Tessa Watts, April 2016

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

 

Amplifying Older People’s Cancer Voices through film

Do you want to see our Cancer, Older People and Advocacy (COPA) programme brought to life in film? Then stay with us all this week to find out more!

Our Older People’s Cancer Voices project is funded by Department of Health to September 2017. This project is about amplifying older people’s cancer voices into a wide range of settings to bring to life the effectiveness of independent advocacy support for older people affected by cancer.

Margaret and Vivian

A key output of the project is a set of films featuring older people affected by cancer, together with their volunteer peer advocates, and health and care professionals and commissioners, talking about the difference advocacy makes.

Working with Cancer, Older People and Advocacy project partners Beth Johnson Foundation, I-CANN, Help and Care and Dorset Advocacy we are delighted to see the release of our year one films.

Throughout spring and summer 2015 these project partners worked alongside OPAAL and our filmmaker Meirion Harries of Webenable to bring together older people affected by cancer who wanted to use their knowledge and experience to develop better services for their peers. In addition to securing a fantastic team of volunteers and advocacy partners who were willing to go in front of the camera our project partners themselves participated. They were able to secure a wide range of health and care professionals and commissioners whose experiences will support and encourage their own professional peers to see the value of advocacy for older people affected by cancer.

As project partner Janet Cullingford from I-CANN reflected in a recent blog post:

 Everyone who took part commented on how much they had enjoyed being a part of it, and were made to feel at ease by both the interviewer and Meirion. It also provided fascinating insights into the way that films are edited, cuts used, even the importance of lighting.

OPAAL’s Ang Broadbridge reflected on her experience of the filming process:

This series of films forms part of a package of capacity building support that cancer, older people and advocacy project partners can use to promote and develop their services. Each film has a call to action; for example to encourage new volunteers, to support health and care professionals to make referrals, and we are excited about showcasing these films and getting these key messages heard. I’m hugely grateful to the project partners and participants for their support in making these films a reality, I want to say a big thank you for all your support!

Thanks also to Meirion who has captured so well the experiences of older people affected by cancer, the motivation, commitment and passion of our volunteer peer advocates, and the understanding of advocacy that the professionals we work alongside have developed. Meirion’s own understanding of advocacy and sensitive approach to storytelling has helped us to really capture and amplify the voices of older people affected by cancer.

We’ll be releasing a film each day this week on the blog, starting with an introduction to the Cancer, Older People and Advocacy programme tomorrow, make sure you visit us again to be the first to see it.

Ang Broadbridge, OPAAL

Dorset Macmillan Advocacy Project Marks 1st Anniversary with Tea Tasting Event

To celebrate the anniversary of the Macmillan Advocacy project here in Dorset, we wanted to plan something which would bring people together and reward our volunteers for their time and commitment to the project.

A warm welcome for our volunteers at Comins Tea House

As our county wide project is managed from two sites – Help & Care in the east and Dorset Advocacy in the west of Dorset – we looked for something we could do in a geographically central location. We were thrilled to be able to invite volunteers to Comins Tea House in Sturminster Newton right in the heart of Dorset. Comins Tea House was set up about 2 years ago by Rob and Michelle Comins whose commitment to quality teas has led them the travel the globe in search of teas to import and share here in the UK.

On the day, a combination of 16 volunteers and Project staff met at the Tea House and were guided through a tasting of 6 different teas from the lightest white tea to the darker, more traditional Assam. Not a drop of milk or a spoonful of sugar in sight, we were introduced to the delicate flavours and the traditional methods of brewing and drinking native to each tea’s origins. After the tasting everyone was offered a tea of their choice and a selection of very delicious cakes.

Advocate Peer Volunteers Bob and Maddy Smith share their tasting notes

Rob Comins was inundated with questions from the assembled tea tasters but his extensive knowledge of the teas, their productions, history and brewing was easily up to the task. It was generally agreed that the whole event had been a great success and I saw of lot of people leaving clutching their new teas.

At the end of our first year, here at Dorset Macmillan Advocacy we were pleased have the opportunity to not only pause, look back and reflect on what we have achieved so far but also to look forward to what we might achieve in the next 12 months now that so much of the project’s foundations are laid.

Jenny Rimmer, Dorset Macmillan Advocacy

 

What is the relevance of my story to my advocacy partnership?

This question formed the basis of small group discussions at the recent Networking Forum for peer volunteers of Dorset Macmillan Advocacy at Help and Care.  Our volunteers come together every other month to share experiences and learn from one another.  In November there was a real buzz as our newly inducted team met our volunteers who have already had several partnerships.  The groups formed for this particular discussion included a mix of experienced and rookie advocates so the question could be considered from a theoretical angle and looked at in practice.

There was enormous energy in the room and fierce engagement with this topic.  Jo Lee, Macmillan Senior Advocate, invited feedback from the discussion and we captured many interesting points including those shown below.  One volunteer commented afterwards that she felt that participants had been ‘courageous’.

‘A partner may have other issues such as social issues or co-morbidities which are of greater concern to them.’

‘By getting to know your partner you allow their priorites to become clear.’

‘Guard against saying “I know how you feel” – we all feel differently’

‘The practicalities of how we personally cope could be more relevant that how we ourselves feel or felt.’

‘It could help a partner to know that their peer volunteer advocate has come through difficult times.’

‘Create a safe space for your partner to think and speak in.’

We were very glad to be joined on the day by Rosie Young from Oxfordshire Advocacy (see Rosie’s recent post). Rosie stated how valuable she felt advocacy support had been for her and described her experience to us.  Help and Care and Oxfordshire Advocacy are linked as part of the mentoring scheme for new delivery partners and Dorset Advocacy are similarly linked with AgeUK Bristol.

Rosie Young, Cancer Champion, Oxfordshire Advocacy, and Marion Summers, Peer Volunteer Advocate, Dorset Macmillan Advocacy

 

 Kathleen Gillett, Dorset Macmillan Advocacy

Why is peer advocacy support so vital for older people affected by cancer?

Kathleen Gillett from project partner Dorset Macmillan Advocacy and  I recently presented workshops at Macmillan’s Cancer Voices Conference. During the workshops looking at our Cancer, Older People and Advocacy project we had the pleasure of the company of 21 people affected in some way by cancer. Most of them were older people, many diagnosed with cancer.

We introduced the project, explained about peer advocacy and told everyone where the service is currently available. We also talked about working in partnership with Macmillan Cancer Support and how we’d both like to see a future where every older person affected  by cancer who needs peer advocacy support can get it.

Jo Coulson. Staffordshire Peer Advocacy Project on left with Kathleen Gillett of Dorset Macmillan Advocacy

Near the end of the workshops we asked those in attendance about where they thought advocacy support might have been or would be useful in the cancer journey and here are some of the responses:

When given a diagnosis of a short time.

To support person in their decision where to be if not want to go to hospice or hospital.

At diagnosis and contact before the service kicks in.

When I left hospital after surgery.

As someone who has vocal problems, sometimes having someone to speak up for us can be very helpful.

Someone to be with – a friend.

Explain what is happening and treatment.

One to one talk important.

Support after end of treatment – say a couple of months after.

To find out information about treatments.

Getting doctors and hospitals to provide the best available treatment, getting doctors to prescribe the most appropriate drug treatments, having someone to be there during chemotherapy. 

She died so close after her diagnosis there was even more reason for her to have someone outside of the family to perhaps support her!

Since my grandfather’s diagnosis he has had little input. We as his family have been his advocates but it would be helpful if he was able to speak to someone one-to-one so he can have a say.

When my grandmother was diagnosed with stomach cancer there was no advocate to support her and speak about thoughts she probably didn’t want to share with her family.

Finding a local support group.

Help to research alternative surgery.

Signposting to the right advice about benefits and finances.

Support when the patient’s choice is not what the family wants.

There are so many times and places that a peer advocate’s support could be helpful. It’s one of the main reasons we’re proud to be further developing this work. Every peer advocate our delivery partners recruit, train and support leads to even more older people affected by cancer benefiting. Join us in the call to make this service available to every older person affected by cancer who needs it, no matter their circumstances or where they live.

 

Marie McWilliams, OPAAL

Every Step of the Way being very well received

A copy of Every Step of the Way, our recent publication telling 13 stories illustrating the difference independent advocacy support makes to older people affected by cancer was sent to Annette Brooke, MP for Mid Dorset and North Poole Constituency. It was sent by project partner Help & Care who have been in regular contact with Annette in her role as joint-chair of the All Party Parliamentary Group on Breast Cancer.

Annette Brooke MP

Annette was really impressed by the publication and sent Help & Care a letter which said: “Thank you for sending me the booklet “Every Step of the Way”. This is a fantastic way of showing how treatment in the Health Service and associated services can be better accessed by older patients with the support of a well-trained advocate.”

She went on to ask for an additional 2 copies to give to her co-chairs on the All Party Parliamentary Group on Breast Cancer which Help & Care were happy to supply.

If you haven’t already you can download a copy of Every Step of the Way by clicking on the link at the top of this post. If you prefer you can order a hard copy, free of charge, from Macmillan Cancer Support by clicking here.

OPAAL to receive share of £4 MILLION to support proposals in the Health and Care field

OPAAL is to get funding to develop new, innovative approaches to health and care, actively share excellent practice or improve integrated care and efficiency.

Voluntary sector organisations submitted funding bids to the Department of Health setting out how they could help meet the Departments objectives of better health and well-being and better care for all and how their proposal has potential for national impact.

Minister for Care and Support Norman Lamb said: “These projects play a crucial role in supporting people, their families and carers. They are examples of just some of the excellent and innovative work going on throughout the country in the voluntary, community and social enterprise sector – all of which help to create and support strong and resilient communities.”

Minister for Care and Support, Norman Lamb

The Department of Health funding comes from the Innovation, Excellence and Strategic Development Fund (IESD) and will cover the cost of a Development Officer post for 4 days a week for 3 years. The Development Officer will work on a  new OPAAL project called Older People’s Cancer Voices alongside the Flagship Cancer, Older People and Advocacy Project and will build relationships between Clinical Commissioning Groups and independent advocacy organisations. Initially the project will work with pilot partners Beth Johnson Foundation, Dorset Advocacy, Help & Care and Sefton Pensioners’ Advocacy Centre to create a library of filmed case studies. These real life stories will, like our recent publication Every Step of the Way, aid the buy-in to advocacy and support Commissioners, Health & Wellbeing Boards and Healthwatch to get a better understanding of the impact that advocacy can have.

We aim to produce best practice guidance for use by providers of advocacy services to older people to help them build relationships with Commissioners. Eventually this guidance will be made available across the whole of the advocacy sector. This guidance should ultimately lead to greater opportunities for older people to influence service delivery through Health & Wellbeing Boards and Healthwatch, promoting equality of opportunity along treatment pathways.

Kath Parson

Kath Parson, OPAAL’s Chief Executive, said ” We are absolutely delighted with this award, this money will help us bring the voices of older people directly to the attention of local decision makers. We aim to support older people to make films of their stories to be used to educate and inform local decision making ensuring that independent advocacy becomes a key component of age friendly care using evidence we will gather as shining examples”.

We are currently recruiting for a new Development Officer and hope to see the project get underway in the Autumn. If you are keen to work with us on this exciting project you can download the application pack from the home page of the OPAAL website by clicking here. The closing date for applications is Tuesday August 12th and interviews will take place in Stoke on Trent on Wednesday 10th September.

Marie McWilliams, National Development Officer, OPAAL