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)

 

 

 

 

The other “C” word

Juanita Williams of Sandwell Cancer Older People and Advocacy (SCOPA) project is thinking “Christmas”:

I have to admit I am a massive fan of the Christmas period. For me it’s all about friends and family and getting together having fun. Having said that I am not averse to giving and receiving presents particularly if they are given with love.

Imagine how delighted I was to hear from one our Local Cancer Champions Board members, Paul Litchfield, last week to tell me about some Christmas hampers that were being distributed by Macmillan Cancer Support from one of their partners Poundland.

The Partnership with Macmillan Cancer Support and Poundland started in May 2009 originally for one year only. Following the success of Year one where the £100k target was smashed to raise £180k and following a staff vote, the partnership continued into Year two. Each year (sometime between January and March) Macmillan go through the staff vote process and have won this each time. It was then recommended that Poundland remain supporting Macmillan until they had achieved £1 million. This was reached in March 2014 and it was then decided that the partnership would continue.

They are now into the eighth year (9th by May 2017) and are on a drive to crack £3 million by the end of 2016. Macmillan Cancer Support recently received a huge donation from the sales of carrier bags (£672k). Poundland Staff have also taken part in numerous fundraising events including London Marathon, National 3 Peaks, Land’s End to John O’Groats, Dragon Boat races and a couple are hoping to do Mount Kilimanjaro in 2017. Poundland suppliers are always keen to support (especially with Christmas hampers) and with sales promotions around World’s Biggest Coffee Morning time in September.

Paul was contacted by Lesia at Macmillan as she had a number of Christmas hampers to donate to his patients at the Queen Elizabeth Hospital in Birmingham.  Paul is a valued member of our Local Cancer Champions Board and knows very well the amazing work our volunteers do with their partners here at Sandwell Advocacy on the Sandwell Cancer Older People and Advocacy project so when he realised he would have a number of surplus hampers he asked if it would be possible for us to distribute the remaining hampers to Sandwell Cancer Older People and Advocacy partners.

After a few phone calls, Lesia confirmed it would be appropriate for us to share the hampers and we made arrangements to go over and collect them.  We have a new volunteer David, who to date has not been matched with anyone.  He is chomping at the bit to get started and was really happy to help with the collection and delivery of hampers.

Juanita

Imagine the delight when our volunteers delivered the hampers to their partners.  They were full of all kinds of items from tea towels to Santa hats, chocolate bars to chewy sweets and crisps to candles. One of our partners is nursing her husband back to health as he has recently lost over a stone in weight.  She commented that the tins of soups and chocolates would certainly go some way to fattening him up for Christmas!

 

 

 

 

 

 

 

It’s fair to say there were a few tears of joy shed in Sandwell! The Sandwell Cancer Older People and Advocacy team would like to take this opportunity to wish you all a merry Christmas and thank all of the staff and customers at Poundland for their kindness and generosity to people who are affected by cancer. Let’s hope they break the £3m target and continue this amazing show of generosity.

Juanita Williams, Volunteer coordinator.

Our cancer journey

Today Bec Hoare from Cancer, Older People and Advocacy programme delivery partner Getting Heard (formerly Oxfordshire Advocacy) explains about an exciting new report by peer advocates called “Our Cancer Journey” and a film featuring Linda and Rosie:

Over the last year or so, a number of our Peer Advocates, who are also members of our Local Cancer Champions Board, have got together to share their experiences as patients receiving treatment within the Oxford University Hospitals Trust.

They have produced a report that encapsulates some of their feedback, comments and thoughts about their own experiences and those of their clients. This has led to a number of recommendations for changes to certain aspects of some hospital services, ranging from facilities and practical matters within hospital waiting rooms to issues around car-parking. They have also considered the important area of informed consent and the ways in which patients are given and receive information.

The report has now been shared with senior staff within the Oxford Hospitals, and has been very positively received, with a real readiness to work together to address the recommendations. You can access the report by clicking here

To accompany the report there is a short film clip of one of the Peer Advocates who is also a Cancer Older People and Advocacy client, and a contributor to the report, discussing with her Advocate the very positive impact of advocacy in her own situation. You can watch the clip of “Linda and Rosie” by clicking on the film below:

 

We very much hope you find the report and film clip helpful and illuminating, as well as challenging.

Bec Hoare, Getting Heard

“I wanted to be more than “Nanny” in my retirement”

In today’s post Sherry, a peer volunteer advocate with Sandwell Advocacy’s Sandwell Cancer Older People Advocacy (SCOPA) project, tells us her volunteering story:

My name is Sherry and I have been a volunteer at Sandwell Advocacy since March 2015.  I was a staff nurse for over 45 years and when I retired in 2014 I was adamant I was going to do something productive with my time.  I have grandchildren who I adore but having had a very demanding career I wanted to be more than “Nanny” in my retirement.  I trained in Chester then worked in plastic surgery, something I thoroughly enjoyed. My final working years were spent as an ophthalmic nurse in Sandwell. Shortly before I retired I was diagnosed with breast cancer, this was a shock to me as I had always attended screening and knew exactly what to look for.  I received radiotherapy and chemotherapy and continued to work throughout. I am still under surveillance and attend yearly mammograms but “Once a nurse, always a nurse” I continue to stay busy.

I met Paddy and Juanita at a Cancer wellbeing fayre hosted by the Sandwell and West Birmingham Hospitals and they told me about the exciting new project they were working on, supporting people over the age of fifty who are affected by cancer – a perfect opportunity for me to put my skills and experience to good use.  I took part in the training and was soon partnered with a woman who had agreed to advocacy as she had some housing issues. My own experience helped me enormously as I had a good idea of what my partner was going through emotionally and I soon developed an extensive knowledge of housing policy.  Although the partnership has ended I feel I have made a very positive contribution to my partner’s journey and she knows she can come back to SCOPA if she feels she needs our help again.  With the knowledge I gained I was recently able to support one of my elderly neighbours who needed to move out of his flat whilst major work was being carried out. I wouldn’t have known about such things prior to becoming an advocate. I have also been instrumental in getting a gas supply to the flats where I live in order that I (and other tenants) can manage our heating more suitably. Overnight storage heaters are not the best if you need to adjust the temperature frequently as a result of medication. They do say you learn something new every day.

Sherry

Throughout my career I had experience of advocates and their role but it has been challenging and very rewarding to be on the other side of the relationship.  My knowledge of the NHS and hospital policies has helped me no end and I have enjoyed visiting hospitals with my partner who was not confident in this environment.  I was able to ask a lot of questions on her behalf to ensure she was fully able to make informed choices.

I now have a new partnership with a husband and wife, they also have housing issues although totally different.  I have enjoyed running around for them and making phone calls to assist them in downsizing to a more manageable property. They appreciate my matter of fact approach and particularly the fact that I have time, something they haven’t always got.

I haven’t limited my volunteering to advocacy practice, I have joined the Local Cancer Champion Board as I feel I have professional experience which will benefit the project. I have also ventured down to Vauxhall in London with Juanita, the volunteer coordinator, to attend a National Champions Board meeting at Macmillan HQ – that was a long and tiring day but I thoroughly enjoyed the opportunity to meet with other champions and staff on the programme.  I have taken part in the national evaluation of the Cancer, Older People and Advocacy Programme  by BRAP and was also involved in Working Together for Change led by Helen Sanderson Associates which again drew on other aspects of my experience.

I would recommend volunteering to anyone like me who wants to give something back.  Additionally for any retired professionals who want to do something similar to what they have done as a career, this is an ideal opportunity to be part of a valued and respected team.  If anyone out there is thinking about becoming a peer advocate I would recommend you talk to someone who is volunteering and find out first-hand what it’s like, I think you will get a positive response.

Sherry, Sandwell Cancer Older People & Advocacy

How our steering group helps us to network and build partnerships

Our Local Cancer Champions Board, the steering group for Dorset Macmillan Advocacy, changed its name in 2014 to Cancer in Older People Development Group.  Members wanted to create a group that could, in addition to overseeing our service at strategic level, bring together people interested in improving patient experience for people over 50 affected by cancer and their carers. They felt that the new name was more self explanatory and we are fortunate to have an interesting mix of people on the group.

As Dorset Macmillan Advocacy is delivered by two organisations in partnership the steering group sought to meet alternately on different sides of the county.  Meetings have been hosted since 2014 by Lewis Manning Hospice in Poole and since last year by Joseph Weld Hospice in Dorchester.  We have benefited from learning about the hospices and our presence there has raised our profile with their staff and visitors.

We also invite local guests to the group meetings such as the project lead for the Macmillan Information Scoping Project which took place last year and the director of Dorset Living Well Active, a physical activity project which is a partnership between Macmillan and Sport England.  The group can explore joint working at both strategic and operational level and this really enhances the daily  networking that staff and volunteer advocates do.

The new Chief Executive of Weldmar Hospice Care Trust, Caroline Hamblett, joined our last meeting in May and described the variety of community services that the hospice provides. Senior Sister Sally-Anne Baverstock then gave the group a tour of the facilities which include 14 in-patient beds all with views over the beautiful garden and countryside beyond.  We’ll arrange a visit for our team of volunteer advocates in the near future.

Pictured left to right are Sally-Anne, Paul Hickman, Chair of Trustees at Help and Care, Emily Brown, Senior Volunteer Coordinator at Dorset Advocacy, Jenny Rimmer, Macmillan Senior Advocate at Dorset Advocacy, Bob Smith, volunteer advocate.

Kathleen Gillett, Dorset Macmillan Advocacy

 

 

Our volunteers visit the Queen Elizabeth Hospital

In today’s post our colleagues at Sandwell Cancer, Older People and Advocacy service tell us about their recent Local Cancer Champions Board visit:

At the start of 2016 we decided to liven up our Local Cancer Champions Board meeting and we invited our members to each make a pledge to the project.  This could have included showing the OPAAL films at staff meetings, talking to colleagues about Sandwell Cancer Older People and Advocacy or writing a blog. Mr Paul Litchfield, the Cancer Information and Support Services Manager at The Patrick Room, Queen Elizabeth Hospital Birmingham invited us to bring our volunteers over to find out more about what’s on offer for cancer patients in Sandwell and Birmingham. 

Eight of us made our way over by car and taxi and were very pleasantly surprised to find the fortnightly Queen Elizabeth Hospital Farmers Market was in full swing!  What a delight for the eyes and feast for the belly!  The first thing we smelt was delicious curry goat, rice and peas, a Caribbean favourite. We can only imagine the happiness someone would get if their visitors were to bring that up onto the ward at visiting time.  There were delicious fresh fruit smoothies and juices, freshly baked breads and cakes, jams, chutneys and pickles, pies, pates, meats, cheeses, teas, veggie meals, cakes, wraps, snacks, deserts and both local and exotic fruits.  Unfortunately we didn’t have time or we certainly would have spent a good hour wandering around.

Apparently there are always fruit and vegetables available for visitors and patients but this was an additional and amazing array of organic and homemade delicacies.  Certainly just what the doctor ordered.  We take our hats off to the organisers of this great market and I am sure we will be back.

Once inside the Cancer Centre we were greeted by Paul Litchfield who was our host for the day.  He had arranged refreshments for us on arrival and took us up to one of the training rooms where he explained all about the new state of the art hospital and all the services run in and around. 

The latter part of the session was taken up with case studies and some of Paul’s personal stories about his work.  Having been in nursing for more years than he was willing to admit to he certainly kept us entertained and gave us all lots to think about in relation to how times have changed and what the future might hold.  He also gave us some startling statistics and facts about cancer and specifically the Midlands area which has an increasingly diverse community.

The volunteers who have themselves had cancer were familiar with the setting and said it brought back many memories.  Those who had not been before found it extremely interesting and useful.  Paul extended his support to everyone and offered to be of assistance should any of our advocacy partnerships require his help and knowledge. 

What a great day out with people who are really making a difference and a fantastic pledge of help from one of our very own champions Mr Paul Litchfield.

Further details about the Patrick Room, Cancer Information centre can be found on http://www.uhb.nhs.uk/patrick-room.htm

And details of the Farmers market (for all you foodies) can be found on www.uhb.nhs.uk/farmersmarket

“..supporting older people with cancer across a spectrum of issues..”

In this post Lizzie Sturm, Chief Executive of Advocacy in Barnet, explains what it has been like becoming involved in the Cancer, Older People and Advocacy Programme funded regionally by Macmillan Cancer Support:

Advocacy in Barnet has just reached its’ sixth month milestone; becoming a Macmillan partner in May this year. As a team we have been actively and widely promoting the project.

Volunteers Sarah Humphreys and Nicholas Johnson carrying out mock interviews

Volunteers Janet Maddison and Ian Lanman

 

Having previously heard of the range of challenges faced by the Cancer, Older People and Advocacy projects at the Cancer, Older People and Advocacy National Board Meetings we were prepared for a myriad of scenarios. Happily, I can instead say the project has been building smoothly in terms of delivery and awareness raising. 8 volunteers have been recruited, trained and actively providing advocacy. As a Macmillan partner organisation, we are privileged to be able to take advantage of the training programme they run with 3 of the new volunteers attending Macmillan’s Cancer Awareness Face to Face training.

 

 

Our soft launch held last month was successful with guest speakers from Barnet Macmillan Citizens Advice project, Cancer Research UK and Macmillan.

We have held two Local Cancer Champions Board meetings comprising 11 members including local Macmillan services, Macmillan GP lead, North London Hospice, Barnet CCG, Barnet Macmillan Citizens Advice project and a volunteer advocate.

 

We have to date received 8 requests through a range of routes and are supporting older people with cancer across a spectrum of issues including financial, social care, practical support, housing and moving into care. In one situation, advocates are supporting a couple both affected by cancer and in their late 60s, going through the most difficult period both emotionally and physically. The Macmillan Cancer Support Volunteer Advocate is supporting the husband who also has dementia in settling-in in the nursing home and liaising with the nursing home and sheltered accommodation regarding moving his belongings; the Macmillan Paid Advocate is supporting the wife with terminal cancer with her End of Life Care wishes and her move from the hospital to the nursing home where the husband has moved. This couple has no relatives and friends to support them and cases like this highlight the importance of Barnet Macmillan Cancer Advocacy services.

Cyril Dainow with an Older Person Affected by Cancer from Macmillan Engagement Event

The challenge in this project has unexpectedly been the need to re-recruit for the volunteer co-ordinator role but with interim cover for this position, there has been no disruption to this fantastic service.

Lizzie Sturm, Advocacy in Barnet

Looking back over the last year at ICANN

Janet Cullingford, Services Manager at delivery partner ICANN tells us about their recent AGM and input on the day related to their cancer advocacy work:

On Tuesday 6^th October Independent Community Advocacy Network North (ICANN) held our Annual General Meeting, as well as the usual AGM business, this gave us a wonderful opportunity to celebrate our involvement with OPAAL on the Cancer Older People and Advocacy Project, by showcasing the Cancer Voices presentation, including film.

Angela Broadbridge the project lead from OPAAL, introduced this with a presentation explaining both the Cancer Voices and ‘Train the Trainer’ work which we participated in. 

 

Our audience were then invited to watch a short film designed to encourage health professionals to refer older people affected by cancer to our service. These films are also available on this blog, and on You tube. This was very well received, with people commenting on how it brought the project to life.

 

 

This was followed by two ICANN ‘train the trainer’ representatives, talking about their own cancer journeys; Richard Timson, one of our volunteer peer advocates involved with our Cancer Older People and Advocacy work, and Marilyn Eckton who is a member of our Local Cancer Champions Board. They were both wonderful advocates for the benefits of the Cancer Older People and Advocacy project. Their stories were both emotive and powerful and told from their own experiences. Whilst those experiences were quite different both had also shared many of the same issues, issues which could have been improved with the support of a peer advocate.    

Since this event they have been invited by two of our local clinical commissioning groups, to present to their boards. They will talk about the project, as part of the patient experience group, to inform future service delivery.

Janet Cullingford, ICANN

Celebrating Age in Bristol

A crisp bright morning on Sunday 26^th October saw the launch of Bristol’s ‘Celebrating Age Festival’ at the M-Shed (a three storey, contemporary museum of Bristol social and industrial history) that overlooks the docks in the centre of town. Organised by Age UK Bristol and a consortium of older people’s organisations this launch event took over the whole atrium and exhibition space of the M-Shed with stalls, presentations, and all manner of shows.

The Age UK Bristol Cancer, Older People and Advocacy project had a table in the Health Room, sharing a space with our local partners Macmillan Cancer Support, who were there to promote their Buddy scheme, and various other local projects and services. Luckily for us the Macmillan staff member on the stall is actually on the Bristol Cancer, Older People and Advocacy project’s Local Cancer Champions Board (LCCB), so was well able to explain the difference between their various services and that offered to older people affected by cancer by our advocacy project. Very kindly, two other members of the LCCB (Joan Cox & Sue Perry) had offered to man the stall for the day, so were able to give all of the information people needed. The Health Room also had stalls covering a wide range of condition-specific services, such as the Alzheimer’s Society & the Stroke Association, and other organisations interested in older people’s health and well-being, such as HealthWatch and Care Direct.

COPA Project LCCB member Sue Perry explains the project to members of the public

After setting up the stall, and a handy half-hour of networking around the room sharing details of the Cancer, Older People and Advocacy project and collecting contact details for organisations that would be interested in knowing more, it was time for a quick interview on local radio, which was broadcasting live from the event throughout the morning. A whistle-stop tour through what the service could offer, why the service is needed, and how potential service-users and volunteers could get in touch was livened up by the background noise of a fantastic gentlemen who can ‘sing’ the songs of hundreds of different birds echoing up and down the atrium.

Around 3,000 older people visited the Celebrating Age festival and enjoyed several choirs, a fabulous fashion show for people over 65, indoor cricket, cookery demonstrations as well as being able to collect information on the Cancer, Older People and Advocacy service, Age UK Bristol, and the many other agencies that want to help older people in the city. Although it was hard work it felt well worth it; roll on Celebrating Age 2016!

Ben Sansum, Age UK Bristol

A view from a Local Cancer Champions Board member

My name is Joan Cox and I am a member of the Age UK Bristol Local Cancer Champions Board (LCCB).  As an Age UK Bristol trustee I was very pleased when we received the funding from OPAAL to run a Cancer Older People and Advocacy Project, and was keen to support the development of this work.  I hoped I could bring both professional and personal experience to the Board.

I have retired, but spent my working life in health and social care.  Initially I worked in social work and vocational further education, then in the voluntary sector managing community projects, some part of national programmes, providing services for carers, people with dementia, and adults with other health needs including cancer.  Many of these projects recruited and trained volunteers to work with service users.  On a personal note I had cancer myself 25 years ago and am very aware of the impact of receiving a diagnosis of cancer.  I was in my 30s, very fortunate to have the support of friends, family, and work colleagues during my treatment, and made a full recovery. Other people’s experiences, particularly those of isolated older people can be very different from mine, and this is why the Project is so needed.

Joan Cox

 

There have been two meetings of the Age UK Bristol LCCB to date – in September and December 2014.  My fellow champions are:  Piers Cardiff (Macmillan Regional Volunteer Development Manager), Sue Perry (Age UK Bristol Trustee and former Director of Abbeyfield), Carole Dillon (John Dillon Foundation, a new charity for cancer care in the Bristol area), and Tracey Street (Macmillan Involvement Coordinator for the South West).  Ben Sansum (Age UK Bristol Information and Advice Service Manager and the Project Manager) has supported the Board and acted as interim chair, taking minutes and distributing papers.

So far we are a small, but focussed and enthusiastic, group keen to learn about the progress of the other OPAAL projects around the country as well as thinking about how our local project is developing.  We have shared ideas about many aspects of the project including publicity, referrals, volunteer recruitment and support, how we can use our local contacts and networks to share information about the work, and encourage others to join our Board.

With volunteers’ support for older people at its heart, the Cancer Older People and Advocacy Project reflects the wider ethos of Age UK Bristol.  All our services for older people rely on volunteers to keep them running, and we are very keen to support volunteering amongst older people themselves as it offers opportunities to enhance their personal well being.

Across Bristol the project complements other support and services for people with cancer, and is being welcomed by local agencies as well as the individual older people who are being referred.  We appreciate that it is still early days and it will take time for the project to grow and develop, but we are confident we have made a good start and look forward to the future.  The LCCB has an important role to play guiding and overseeing the project and using our local knowledge, contacts and networks to help it grow.

 

Joan Cox, LCCB member, AgeUK Bristol