Understanding and motivation from another angle

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

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

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

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

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

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

Kathleen Gillett, Dorset Macmillan Advocacy

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Guinea pigs in London!?

In today’s post Karen Pigott, from programme partner Dorset Advocacy and Dorset Macmillan Advocacy, tells us about some recent training delivered after a range of delivery partners identified a need for support on complex case work:

On the 16^th and 17^th February 15 brave souls from a variety of projects across the country attended Complex Case Training in London. The training was commissioned by OPAAL for the Cancer, Older People and Advocacy programme and designed by Jenny Purcell from Dorset Advocacy and delivered by her and myself.

This was the first time the training was delivered so a big ‘thanks‘ to the participants for their suggestions and patience as we tweaked some timings and content to accommodate everyone’s needs.

There was a good mixture of volunteer peer advocates and paid staff with a range of experience which really added to the dynamics and depth of the two days. The importance of being able to share ongoing complex and challenging issues in a supportive environment with a problem solving approach cannot be underestimated.

At the end of the course all but one participant scored themselves as having increased confidence in approaching complex case work.

Every participant received a ‘Tool kit for Complex Case Training’ to enable them to cascade it through their own organisation.

It was an intense two days but hopefully everyone is confidently applying everything they learnt and shared in whatever situation they find themselves in!

Karen Pigott, Macmillan Project Coordinator, Dorset Advocacy

 

New Macmillan project in North Staffordshire

In this post Kath Curley from programme partner Beth Johnson Foundation introduces us to new work going on in her local area:

I am pleased to be able to write about a new Macmillan funded project that is taking place in Staffordshire.

The Project is led by a familiar face to the Staffs and Wolves Cancer Advocacy and Support Project – Jo Coulson –  and Angie Bunn has taken up the role of Engagement Officer.

Cancer support services are perceived to be patchy or even inaccessible when the person affected by cancer is also Lesbian, Gay, Bi-sexual and Transgender (LGBT). There is a lack of solid evidence in relation to this area of need and an absence of information regarding effective approaches to service provision. With a view to improving this situation this project seeks to redress this by speaking directly to people from these groups and undertaking an in-depth assessment of current service “fit”. Recommendations will be made for service redesign based on the experiences recorded across Staffordshire, including Stoke on Trent. It is expected that the recommendations made will influence services nationally and may form the basis of a much broader review of services.

Jo Coulson

Scoping aims are to find out:

• What are LGBT people’s experiences of cancer treatment and support locally?
• What factors facilitate/inhibit open discussions between clinicians and LGBT patients?
• How well educated are local health professionals about LGBT issues (both clinical and personal – do doctors make assumptions)?
• What are awareness levels within LGBT communities about specific cancer risks, screening programmes, etc?
• Is there a need for specialised LGBT code of practice, cancer information and literature, etc?
• Can true ‘patient centred care’ disregard sexuality or gender variance?

It will use the following strategies:

• Face-to-face meetings & capturing stories
• Surveys and questionnaires
• Focus groups, workshops, roadshows
• Internet and social media
• Workplace engagement with clinical staff
• Information gathering and capturing experiences, identifying trends and gaps
• User involvement in project development                                                                                                                                                                                                                                                                                  

 We wish Jo and Angie all the best with this Project and look forward to the outcomes. I will try to keep you all up-to-date as the Project progresses.

Kath Curley, Staffs & Wolves Cancer Advocacy Project Manager

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 

What a coincidence!

Our colleagues and programme partners Staffs & Wolves Cancer Advocacy project have just published the post below on their own blog and Kath Curley project manager has kindly agreed to share it with us:

At last week’s Cancer Older People and Advocacy Programme Project Management Group Meeting Kathleen Gillett, from Dorset Macmillan Advocacy,  gave a presentation on Macmillan’s Recovery Package.

The Recovery Package is a series of key interventions which, when delivered together, can greatly improve outcomes for people living with and beyond cancer.

The Recovery Package is made up of the following elements:

• A Holistic Needs Assessment (HNA) and care planning.
• A Treatment Summary completed at the end of each acute treatment phase 
• A Cancer Care Review completed by the GP or practice nurse to discuss the person’s needs.
• An education and support event such as Health and Well-being Clinics.

Today, Collette Cooper and I met with Sarah Gorton, Macmillan Cancer Survivorship Project Manager, based at Royal Stoke Hospital, who has taken up a 2 year Macmillan funded project. Sarah is working with the CNSs, across Royal Stoke and County Hospitals, for 4 cancer sites:

1. Head and Neck
2. Brain
3. Primary Bone
4. Gynaecological  

to implement an electronic Holistic Needs Assessment (eHNA) within these clinics as an integral part of the Recovery Package.

We discussed with Sarah where advocacy fits within the Package and that Advocates compliment and support the work the CNSs are doing. We hope this will lead to greater partnership and collaborative working with the health professionals.

Good luck Sarah!

Kath Curley, Staffs and Wolves Cancer Advocacy and Support Project Manager.

Advocates relish in the words “not possible”

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

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

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

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

Lizzie Sturm, Advocacy in Barnet

Networking with our local Macmillan Information Manager

In this post Helen Vernon, advocate at SPAC (Sefton Pensioners Advocacy Centre) talks about local networking and partnership working with Macmillan Cancer Support:

I recently spent time with the Information Manager for Macmillan Cancer Support based in Aintree Hospital, which has been based there for about four years.  There were a number of useful points that arose from our discussion and I hope it will result in an increase in referrals from this source.

The Information Manager and the Information Officer have both worked within the hospital in other roles for many years.  As a result they know a large number of the professionals and have made fantastic inroads with regard to promoting their service.  This is particularly true in the case of the Cancer Nurse Specialists (CNS).  It therefore occurred to me that our time would be best spent promoting our service to other professionals in the hospital.  Clearly the CNS were referring regularly to the Macmillan Centre who will in turn refer cases to the Cancer, Older People and Advocacy project as and when appropriate.

We discussed one of the cases that they were involved in and we reflected upon how they intended to proceed.  They acknowledged that there was a role for advocacy in this case and although on this occasion they had completed the work, we could have provided an outreach element that they were unable to.  The gentleman in question was aged 52 so I was able to reiterate that we are able to work with people aged over 50. 

Helen Vernon

During the visit I was given information about a number of projects that I was not aware of, for example a clothing bank run by Macmillan that provides ten items of clothing for people who had experienced weight loss or gain.  This is such a useful resource and I am sure I will be referring to them in the future.

The Information Centre in the north of our borough sits outside of the hospital and so potentially the referral stream from CNS to Macmillan is different.  Therefore we will continue to speak with the CNS in this area.

Helen Vernon, SPAC

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

“..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

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