Working across boundaries . . . is it really happening?

In this blog post Pamela Hill, OPAAL‘s newest National Development Officer, tells us about cascading information to our Primary Care colleagues:

I recently spent two days representing OPAAL at the Macmillan Primary Care conference offering information to primary and secondary care delegates through our exhibition stand.  What an excellent networking opportunity the event provided.  While I wasn’t able to hear any of the speakers, I chatted with a number of Macmillan health care professionals.   They were all extremely positive about the event which was intended to explore how those involved in primary and secondary care can work in a more integrated way to provide the best possible outcomes for those people affected by cancer.  

Pamela alongside Karen Pierce from delivery partner SPAC

 

Delegates were very interested in the exhibition stands and many came forward to find out more about the Cancer, Older People and Advocacy programme.   It was a good opportunity to convince health care professionals who practice in areas where the project doesn’t already operate that we need them to influence their respective CCG’s by explaining the importance and benefits of advocacy support for older people affected by cancer.   Of course, this suggestion was met with the usual response that the CCG’s have no money left in their budgets. 

The really good news is that the GP’s from the 14 areas where the service already operates were very positive about their experiences of Cancer, Older People and Advocacy programme.    I even managed to persuade one or two GP’s who have experience of the benefits of advocacy support to bring their colleagues along to our stand so they too could learn about more about the Cancer, Older People and Advocacy programme. 

 

 

During the conference sessions, while the delegates were listening to speakers, I decided to introduce myself to the other exhibitors and they were all keen to explain their work to me.  They listened to the information I had to offer about the Cancer, Older People and Advocacy programme and we swapped contact details and information leaflets so that we are better able to signpost and refer.  I intend to share the information and leaflets with partners.  

Pamela Hill OPAAL and Karen Pierce SPAC

Working across boundaries?  Yes, I was heartened to feel it really is happening but we must continue to further develop the partnership approach so that we not only offer an holistic approach to services for those older people affected by cancer but wouldn’t it be a real step forward if we could offer the same services in every area of the UK? 

 Pamela Hill, OPAAL National Development Officer

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People Affected by Cancer: Not Alone

“What’s that tardis-like box doing in Churchill Square?” That’s what shoppers in Brighton were asking on the last Friday in August.

The isolation box, a touring art installation by Macmillan, was raising awareness that ‘cancer can be the loneliest place’.

Members of the public were invited to try the isolation box and experience how it feels to be alone in a crowd. Once inside participants could listen to 2 real-life stories told by local people, John and Sarah, about their experiences of having cancer. John, 64, from Hove talked about how lonely his diagnosis made him feel. A few passers-by shared their own stories.

From the outside you could see into the box, but once inside I could see only blurry figures. Amidst the buzz of the busy shopping centre, with people all around me, I felt cut off from the crowd. For those few minutes, despite being aware of people and voices surrounding me, there was a barrier between me and the rest of the world.

The isolation box

People affected by cancer can feel incredibly lonely even when they have friends and family. Research has shown the devastating impact of loneliness, causing people to skip meals, attend vital appointments alone or even refuse treatment. Over 60% of patients go for surgery and radiotherapy appointments alone. Many said this was because they didn’t want to burden friends or family, or the person they wanted to go with them was not available. Some people had nobody to ask.

So what support is there for isolated cancer patients in Brighton? The Macmillan Impetus Cancer Advocacy Service works with some of the most isolated people affected by cancer in Brighton & Hove: older people, people with mental health problems, people with learning disabilities and people with autism spectrum conditions.

They may have limited support networks, or find it less easy to access the information or support they need.

For someone affected by cancer there can be lots of information to take in and decisions to make. Navigating the complexity of health and social care systems can be frustrating and difficult.

Cancer is a life-changing experience. It can generate anxiety and stress and people may lose confidence. This may limit their ability to deal with life in the same way as they did before becoming ill.

Sam Bond

Having someone to help can make all the difference. Advocates act for the person they are supporting. They can visit the person at home or another setting. Advocates have time to listen and find out what is important to the individual. They can help people sort out many of the issues that arise when someone is affected by cancer, as well as general-life difficulties which the person may find it harder to deal with. Advocates can find out about support and activities in the person’s own community.

Cancer Advocacy support aims to reduce isolation, link people up with the support they need, and ensure they are able to make informed choices and express their wishes.  This benefits the individual and everyone involved in their care.

Reach out to someone affected by cancer who may be isolated and lonely. If you know someone who would like the support of one of our cancer advocates, contact The Macmillan Impetus Cancer Advocacy Service on:

01273 737888 or email canceradvocacy@bh-impetus.org

Sam Bond, Brighton & Hove Impetus

A Big Thank You to ICANN Volunteer Cancer Advocates

To celebrate Volunteers Week 2015, ICANN arranged a Volunteers Celebration Event in conjunction with Dobbie’s Garden Centre

We all enjoyed watching an informative demonstration about potting herbs, their uses, and how to look after them. Even gaining some new recipe ideas in the process!

This was followed by a scrumptious luxury cream tea, giving plenty of time to chat, and catch up with other volunteers and staff.

During the afternoon we also introduced the idea of One Page Profiles for Volunteers, and will be continuing to work on this at our next Volunteer Team meeting/Group Supervision.

All volunteers received a certificate thanking them for their contribution to volunteering with ICANN during the last year.

Dobbie’s also kindly donated a planted herb collection in a terracotta pot which was raffled and won by one of our volunteers.

Janet Cullingford, ICANN

‘Think carer!’ says Pat Vinycomb

Pat Vinycomb, Local Ambassador for Dorset of Carers UK, spoke at the recent Carers Meeting at Royal Bournemouth Hospital.  The meeting was organised by the Patient Engagement Team and coincided with the launch of pages for carers on the Trust’s website.

Pat’s keynote address ‘Think Carer: Supporting Carers in a hospital environment’ invited the carers present to reflect on when it was that they realised that they had become a carer and the feelings associated with the realisation that life would never be the same again.  In the hospital environment, said Pat, carers should be recognised for their skills and knowledge, feel valued, have the right information and advice and the choice to say no.  She outlined the challenges facing carers who need to understand what has happened and where to go for further help and advice.  She also explained the anxieties that carers may feel: ‘Can I ask staff a question and/ or challenge?’.

It was clear that Pat spoke from her own experience as she described a tendency for carers to feel they must hide their emotions and the inner conflict they can feel.  She emphasised to the nursing staff present that little things really do mean a lot to carers: somewhere to be private, comfortable seating, refreshments, as well as kindness, empathy and hope.  Above all good communication from hospital staff and being kept up to date is important for carers.

L-R Pat Vinycomb, Ambassador – Carers UK and Marion Summers, volunteer advocate – Dorset Macmillan Advocacy

Pat’s presentation finished with a summary of the many types of practical help and support available to carers in Dorset, Bournemouth and Poole and she urged carers to remember that their own health matters. The carers then took part in facilitated discussions to generate feedback for the engagement team.

Later I talked with Pat and with our volunteer advocate Marion Summers (also a carer) about the support that Dorset Macmillan Advocacy can provide to carers.  Carers can be empowered by advocacy support to know their rights and feel more in control.  I was grateful to the Patient Engagement Team to be invited to the meeting and to be able to provide an information stand.  After Pat’s talk I personally had a much better insight into the challenges facing carers when the person they care for is staying in hospital and we hope to involve Pat in our volunteer training in future.

During national Carers Week from 8 June Jo Lee, Senior Macmillan Advocate at Help and Care, and other Dorset Macmillan Advocacy staff attended a number of events to raise awareness of our service among carers.  The Carers Week campaign this year focused on Carer Friendly Communities and produced this useful Checklist tool for carers which includes a section on Health: Carers Week 2015 Checklist.

Kathleen Gillett, Dorset Macmillan Advocacy

 

In conversation with Malcolm

I recently had the privilege of speaking with Malcolm Orgee, a 54 year old in full time employment with a young family. Malcolm is one of the people affected by cancer that our independent advocacy service supports.

After suffering frequent and disabling headaches for six years Malcolm was finally diagnosed with CLL, Chronic Lymphocytic Leukaemia in January 2013. Malcolm remembers the day of his diagnosis vividly, describing to me the weather, cold clear snowy day, the drive to hospital and conversation with his consultant. He was told he had probably had CLL for six years and given a prognosis of a further seven years.

Malcolm described the news as being an ‘absolute bombshell’. His immediate thoughts turned to his family, his partner and two young children. How was he to tell them?

Thankfully they proved to be very supportive, however living with this condition meant he did not want this to dominate family life, he recognised he needed support from outside his family.

Many people are affected in this way, they have a strong urge to protect family members from the worst of their fears and concerns and often need to share these with someone outside the family.

After many tests and visits to Dorset County Hospital he asked his nurse if there was any support available for him. He was told no not really, he didn’t feel the nurse was very effective. Eventually he called Macmillan Cancer Support who gave him the number of the Cancer Older People Advocacy service at Help & Care Bournemouth.

Six months after his diagnosis Malcolm was introduced to Bob Smith. Bob was to become Malcolm’s advocate. The advocacy service go to great pains to match people needing support with Advocates who themselves have had similar cancer experiences. Bob had previously had Mantle Cell Lymphoma and was able to understand Malcolm’s condition from the word go.

Malcolm was struggling with the bewildering array of information relating to his condition and trying to cope with the emotional effects of his diagnosis whilst grappling with the need to inform his employer of his new situation.

Malcolm works as a Head Gardener on a private estate in Dorset, he loves his work and wants to maintain his position. He is thankful he has supportive colleagues and employers. Nonetheless he has concerns as to what the future might bring for himself and his family.

LMalcolm was placed on a ‘watch and wait’ programme, meaning no immediate treatment was offered. This proved difficult for some members of his family to understand, particularly his elderly mother who constantly asks Malcolm when he is going to be offered treatment.
Malcolm finds it difficult to have to repeatedly explain the ‘watch and wait programme’ to his 81 year old Mum.

For two and a half years Malcolm has lived with quarterly hospital visits, monitoring his condition. For two of these years he has been supported by Bob, an Independent Peer Advocate. Bob has been there for Malcolm whenever he has needed him.

Asked to describe his advocacy support to me Malcolm said “I have been massively supported by Bob, he understands my cancer as his own cancer has many parallels. Bob knows what I am going through and has been there for me every step of the way. He understands all the emotional ups and downs, the complexity of my cancer, the day to day practicalities I live with, the whole scenario”.

He also told me he is constantly amazed by Bob’s dedication, always being there for me, particularly as Bob is a volunteer advocate

Malcolm feels this service is absolutely essential and should be available for all those who need it. He wishes he’d met Bob before he was diagnosed for then he would have had all the support he needed from the outset.

Malcolm recommends this highly personal and confidential service to all, he knows he would not have managed so well without Bob’s support.

I am deeply grateful to Bob Smith and all our wonderfully dedicated volunteers. They freely give not only their time, but bring valuable personal experience of their own to share with and inform their relationship with all those they support.

Bob like his many colleagues has spent a lot of time in training, and being supported by professional paid advocates. He has also contributed to the volunteer team’s experience helping to make our Dorset Advocacy Service one in which we can be very proud.

I’d like to offer my personal thanks to Malcolm for sharing his story, he understands our need to capture his and other’s such stories in our attempts to convince others of the value of our work to those who desperately need advocacy support.

Kath Parson, OPAAL Chief Executive

Dorset Macmillan Advocacy gets its own website

Here in Dorset we are really pleased; our dedicated project website is now live! www.dorsetmacmillanadvocacy.org.

The website was developed by local media firm RAW Media based just across the road from the Dorset Advocacy Offices here in Poundbury. When we approached them with initial ideas about creating a site they quickly grasped the concept of the cancer advocacy project and were keen to help us out. Very generously RAW not only donated their time and resources to design and develop the site but also arranged free hosting.

http://www.dorsetmacmillanadvocacy.org homepage

The website will serve not only to publicise the project to prospective service users and volunteers but also offers a quick referral route as we have incorporated a secure online referral form. We know that busy professionals have very little time to spare – we are hoping that offering this fast route may be an additional incentive for them to refer when they encounter those individuals who may benefit from advocacy support.

Our volunteers got the opportunity to user test the site at our recent anniversary event and gave us lots of positive feedback and gave some sensible suggestions for edits. One of the local Breast Cancer CNSs told us that she felt that having the website made a helpful addition to simply giving patients leaflets to take away.

Gavin from RAW Media shows Volunteer Advocate Cilla the test website

The website has only been live for a week or so but we are really pleased with it and will be tracking referral sources to see if and how it is being used. It has taken a few months to get it together but here in Dorset we are proud to have been part of a successful collaboration between local and national charities and local business.

Jen Rimmer, Dorset macmillan Advocacy

Lights, camera, action!

Janet Cullingford, Services Manager at programme partner ICANN tells us about recently becoming a film star.

As part of the Older People’s Cancer Voices project running alongside the Cancer Older People and Advocacy Service, ICANN were recently asked to host some filming with Meirion Harries from WebEnable.org. 

Filming took place at a variety of venues in the Preston area, ICANN offices, Rosemere Cancer Information centre at Royal Preston Hospital and in a client’s home.

Margaret and Vivian

A series of interviews were carried out including clients of service, volunteers, local cancer champions board members, a Carer of an older person with cancer, project staff and a commissioner of advocacy services from our local authority.

Carol is an advocate

 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.

 

Janet and Tony

It was a busy, exhausting but very enjoyable 2 days, and I’m sure that any of the other Delivery Partners who are joining in with the filming will find the same.

There are 4 separate short films, which will be developed from the filming that Meirion is carrying out. They’ll accompany the toolkit which is currently being designed to accompany and complement the Cancer Older People and Advocacy Programme.

The films will be shown to promote the service to potential clients, attract volunteers, promote the service to referrers especially health professionals, and also to future funders of the service.

Especial thanks to willing client Tony who allowed us to rearrange part of his kitchen, even turning off his freezer to allow best filming conditions.

Once completed we’re planning to use these films to showcase our work . How do you showcase what you do? Please do let us know.

Karla’s Story

My name is Karla   and I am writing this as a volunteer, peer-advocate supporting cancer sufferers and those caring for them. The COPA project is still in its early stages. We have undertaken training which was informative, serious but also fun. I have now seen 3 clients with varying issues. The staff at Age Connects Cardiff & Vale are very helpful and supportive making my fellow volunteers and I feel very much part of the team. I have a passion for the elderly as I believe they do not always get a fair deal, but they have so much to offer, a whole lifetime to look back on and some great experiences to relate. I guess it should be said that I am getting that way too, so really thankful that there are people out there who care enough to help (Hopefully not for a long time yet!!) So many of the older people I speak to, express the feeling that they still have a young mind, but it is trapped in an old body. I hope I always keep that in mind when chatting etc and treat people with the respect they deserve.

Retirement is great, but I am not interested in sitting round all day having coffee or lunching.

  I think that even as we age,  we still need to be needed and appreciated. Personally I can’t    think of a better way to achieve that.

On a lighter note, I haven’t lived in the Cardiff area for long and am eternally grateful for my         GPS to help me find my way around. It is great to discover new places that I might otherwise      not have visited, and meet some delightful people that I would never, were it not for Age    Connects, had the pleasure of meeting.

 

The C Word

Look out for Sheridan Smith portraying Lisa Lynch this Sunday , May 3rd.

Lisa was diagnosed with breast cancer at 28. She decided to blog about her experience of the C Word and to “tell it the way I see it” – it was the only way to cope with whatever came next.

Lisa Lynch studied journalism with the ambition of one day editing Smash Hits. But as something called the internet happened and her favourite magazine became no more, Lisa found herself writing about wallpaper instead of Westlife.

At the age of 28, while editing her second national interiors title, Lisa discovered a lump in her breast – a lump that spawned not just grade-three cancer, but a blog, a book, a writing career and a BBC film. (Talk about milking it.)

Some three years down the line – with newly grown hair, a newly published book and a newly perky rack – Lisa dared to assume that she’d seen the worst… only for the c-word to crop up once more: this time in her bones and brain, and this time incurable.

You can read Lisa’s frank blog here

One in three of us is likely to be diagnosed with cancer and every single one of us will be directly affected by the diagnosis of a loved one or friend. I know how that feels, my 23 year old son having been diagnosed with a mediastinal germ cell tumour on Christmas Eve.

Everything about a diagnosis is devastating but the inability of some people to know what to say to you in the circumstances comes as quite a shock. Some people decide simply not to talk to you at all. Either for fear of upsetting you or from simply not knowing what to say.

If that’s you, at the very least please just tell the person affected you’re thinking about them. If you know them well then give them a hug. A hug can mean you don’t need to say anything.

Our peer advocates are supporting many older people affected by cancer; those either with a diagnosis or affected by that diagnosis (like me). They listen, they support, they encourage but they never ignore.

If you’d like to find out more about peer advocacy support then comment on this post. We’d love to hear from you.

The C Word can be seen on Sunday 3 May on BBC One at 2030 BST.

Marie McWilliams is OPAAL’s National Development Officer and leads on the Cancer, Older People and Advocacy programme.

The local challenges and rewards of our Cancer, Older People and Advocacy work

The Cancer, Older People and Advocacy programme has at its heart the relationship between two human beings: between an advocate and their partner. In Bristol we are finding it an ongoing challenge to recruit volunteer peer advocates, with many people approaching us to enquire but very few continuing on to do the training required and offering the long-term commitment older people affected by cancer need when they are partnered with a peer-advocate. In order to try and address this we have produced a new leaflet that concentrates just on the volunteering aspect of the project – you can see a picture of this below – with a separate leaflet advertising the service to potential clients. We have already seen an increase in potential volunteers contacting us in the two months that we have been distributing this new piece of publicity.

Despite the ongoing challenges of finding suitable volunteer peer advocates we have continued to offer an incredibly supportive service to those older people affected by cancer who have approached us for help, through the efforts of our paid advocacy worker, and that is what I want to concentrate on for the rest of this blog. Our referrals have come from a wide range of sources, including the local authority, health centres & GPs, and other voluntary agencies. Some of the most complex cases we have picked up have come from agencies that have done a certain amount of work with an individual, but have felt that longer-term, more in-depth support is needed. Our paid advocate has been working with one such individual for the last three months.

Christina (not her real name) had been being supported by another voluntary organisation, but when they reached the limits of their service they were anxious that Christina would not be abandoned to fend for herself. Christina’s diagnosis of lung cancer has been complicated by her status in the UK – despite living here for decades she is in immigration ‘limbo’, with her case being held by the Home Office for many years, despite the best efforts of a solicitor to resolve the issue. This meant that as well as the emotional and medical issues she was facing following her diagnosis she also faced extreme financial and practical pressures that are not normally encountered by most older people affected by cancer. While our advocate clearly couldn’t intervene in the legal aspects of her situation she was able to work with Christina on many of the practical issues she faced, helping her to secure ongoing access to food and nutrition, and with assistance from another charity, helping Christina to secure new clothing, as most of what she had was no longer good enough to wear. By accompanying Christina to meetings with these other sources of support the paid advocate was able to help Christina make some small but practical changes to her day-to-day life that have left her much better able to deal with the medical side of her current situation.

The trust and mutual respect that has grown during this work has set this advocacy partnership off to a very strong start, with Christina knowing that the advocate will be there whenever she needs her, giving her greater strength to face her ongoing challenges knowing she isn’t facing them alone. As always, it is the quality of this relationship between advocate and partner that is key, and that continues to give the Cancer Older People and Advocacy programme its undoubted strength.

Ben Sansum, AgeUK Bristol, April 2015