Meet ICANN

Independent Community Advocacy Network North (ICANN) have been involved in providing Advocacy services since 1995, and are extremely pleased to have been chosen to be a part of the Cancer, Older People and Advocacy project. The area we will be covering within Lancashire is for residents of Preston, Chorley, South Ribble and West Lancashire Districts.

It has been a very busy first few weeks! ICANN are lucky to have a pool of existing experienced volunteer advocates, of whom 7, have already expressed an interest in working on this exciting new project, and we will be providing project specific training to them in July, ready for our official launch on the 1^st of August.

We have started awareness raising within health environments including our local cancer information centre, with 3 referrals so far, all around different issues, and can already see how valuable a service this will be particularly for those who are isolated, without much of a support network.

Display from recent awareness event (Health and Wellbeing event in West Lancashire at Edgehill University)

Recruitment for members of our Local Cancer Champions Board, has been so successful, that along with agreeing terms of reference, and electing a chair at our first board meeting, we decided that we would need to change venue for next LCCB meeting in September, as our board room is not big enough!  We also hope to move around the region for these meetings to encourage attendance from all areas, with groups as diverse as Clinical Commissioning Group (CCG) representatives, other local charities working within health or with older people, along with older people who have been affected by cancer themselves.  A representative from this group, was also able to attend the National Cancer Champion’s Board Meeting in London recently at Macmillan Cancer Support HQ.

Staff are busy looking at more ways to promote the service locally, including a flagship event planned for October, to bring together a number of organisations in allied fields, speakers from health and advocacy will elaborate on the Cancer, Older People and Advocacy project, and how we can best work together for the good of our shared client group.  ICANN have close links with Lancashire LGBT and hope to continue joint awareness raising, sharing of resources, experiences and training where appropriate.

Janet Cullingford, Services Manager, ICANN

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OPAAL’s Patron sends her congratulations

Her Grace, the Duchess of Northumberland, Patron of OPAAL has sent her warmest congratulations to OPAAL and all partners involved in the Cancer, Older People and Advocacy project. The news that OPAAL was successful in our £1 Million application to BIG Lottery’s Silver Dreams Flagship funding has delighted the Duchess who has watched our work with interest. 

“I am so very pleased for everyone involved in what is a fabulous service. This £1 Million funding from BIG Lottery gives OPAAL and its partners the opportunity to develop new cancer advocacy services for older people in completely new areas of England. With additional funding from Macmillan Cancer Support enabling services to be developed in Wales for the first time these really are exciting times. It is so encouraging to think that many more older people affected by cancer will get the advocacy support they so desperately need. We all know someone who has had cancer and no matter how much family support you have around you it must make a world of difference to be able to speak to someone who has been through the same thing and who therefore understands.”

OPAAL’s Patron

 

 

About Cancer, Older People and Advocacy

This is the blog of the Cancer, Older People and Advocacy programme. Advocacy is all about Voice, Choice and Control and our programme is about putting that into practice.

We began our innovative project in July 2012 recruiting older people affected by cancer then training and supporting them to advocate for their peers. Between July 2012 and March 2014 we trained 56 peer advocates who in turn provided independent advocacy support to 174 older people affected by cancer. We also recruited 62 older people affected by cancer as National and Local Cancer Champions, these people are now very influential helping us shape and guide our project. On 25th March 2014 we published our first book ‘Every Step of the Way“: 13 stories illustrating the difference independent advocacy support makes to older people affected by cancer. Click here to find out how to download or order your FREE copy.

From May 1^st 2014 thanks to continuing support from BIG Lottery Fund and Macmillan Cancer Support, the project expanded to include 9 delivery partners across England and for the first time 1 in Wales.

These partners have been delivering services from the outset: Beth Johnson Foundation in Staffordshire; Dorset Advocacy and Help & Care in Dorset and Sefton Pensioners’ Advocacy Centre in Sefton.

These new partners began delivering services during 2014: AgeUK Bristol; Knowsley Pensioners Advocacy Information Service (KPAIS); Oxfordshire Advocacy; Independent Community Advocacy Network North (ICANN) in Lancashire; Sandwell Advocacy;  and Age Connects Cardiff.  In 2015 we’re delighted to welcome new delivery partner Impetus who will be delivering services in Brighton and Hove.  If you click on the names of our local partners above you will be taken to their websites where you can find out their contact details.

You can learn more about our work by following this blog, just add your email address in the Follow box on the right hand side of this page. We update the blog regularly with news and stories covering cancer, older people and advocacy. Find out more by reading below…

Watch Kath launch Every Step of the Way

Recently we launched Every Step of the Way our new publication with 13 stories about the benefits of independent advocacy as told by older people affected by cancer. Funded by our partners Macmillan Cancer Support, you can find out more about it by watching this short video clip of Kath at the launch event.

You can download a copy of Every Step of the Way here

Every Step of the Way

Tuesday 25th March sees the launch of our new project publication “Every Step of the Way“: 13 stories illustrating the difference that independent advocacy makes to older people affected by cancer.

Funded by our partner Macmillan Cancer Support, Every Step of the Way features the stories of 13 older people who have been supported by their peer advocates along the cancer journey. The stories are moving and help explain the significant difference being supported by someone close to you in age and experience, who themselves have been touched by cancer, make to everyday life.

Every Step of the Way is FREE as we wish to expand awareness of our work supporting older people affected by cancer. From 25th March a pdf copy will be available via this blog site but if you would like a hard copy please send £5 to cover administration, postage and packaging to OPAAL (UK), c/o 14 The Green, Handsacre, Rugeley, Staffs, WS15 4DP. Cheques should be made payable to OPAAL (UK)

No one should face cancer alone: new TV ad

Have you seen the new Macmillan Cancer Support TV ad?

The message is: No-one should face cancer alone so if you need support of any kind and are not sure where to start or need someone to talk to give Macmillan Cancer Support a call on 0808 808 00 00 Monday to Friday, 9am–8pm or visit macmillan.org.uk.

Macmillan’s helpline makes referrals to our Cancer, Older People and Advocacy service. If someone contacts the helpline and needs advocacy support in an area we currently provide a service in they can be directed to us. Once we’ve had the referral we can provide a volunteer advocate to support you; someone like Yvonne,

Yvonne has a lot of experience of cancer, way too much really. She has lost her husband, mother and brother in law to the disease. That’s why, when she saw a press release about the cancer advocacy service, she felt she had to get involved. She has been involved in the service since it first started and was one of the first volunteers recruited. She hoped to be able to draw on her experience of cancer to inform the support she has been able to offer others in similar situations.

Yvonne isn’t what you’d call a typical volunteer because she doesn’t have a lot of spare time on her hands. She’s in her 50’s, works full time as the deputy head of a school for children with learning disabilities and in some of what little spare time she has she already volunteers at her local hospice. So, Yvonne’s role as a volunteer advocate for older people affected by cancer takes place mostly in the evenings, weekends and during school holidays.

There has been a lot of training. Cancer is a complex and emotional subject and advocacy itself takes a bit of understanding and getting used to. But, as a result of the training she’s done Yvonne feels she has greatly increased her ability to provide support to an older person affected by cancer. She understands that her role is to support and not advise. She really enjoys working with older people and is clear that she’s there to empower the older person to speak for themselves.

Take Mavis for example. Yvonne is Mavis’s advocate. Mavis is 92, lives alone and has blood cancer. Yvonne visits her regularly at weekends to see how she’s doing. Sometimes Mavis doesn’t cope very well, she forgets to take her medication and sometimes forgets to eat. Yvonne provides supports by developing coping strategies for her. Mavis has toyed with the idea of moving into residential care and while she’s keen to remain at home she knows that Yvonne is there to support her whatever she decides.

Yvonne also acts as Sandra’s advocate. Sandra is 77, lives alone and has no family. She has been diagnosed with breast cancer and had an operation in April 2013 followed by radiotherapy. Unfortunately Sandra lost a very close friend at the same time. All of this has left Sandra feeling isolated and unsupported. Yvonne took her to a local cancer support meeting and to the local breast cancer support meeting. Both are held in the evening so Yvonne was able to take her a couple of times until she was used to and felt comfortable there. Yvonne was also able to refer Sandra to a local befriending service to help with her isolation.

Acting as a volunteer cancer advocate has really struck a chord with Yvonne. She’s now looking at opportunities to change career and move into professional advocacy because what she’s been doing makes a real difference to older people’s lives and gives her real satisfaction.

Residential Care Review by the Older People’s Commissioner for Wales

OPAAL would like to commend the Older People’s Commissioner for Wales for her ongoing Residential Care Review. Having already had nearly 2000 responses to her Care Home Review Questionnaire the Commissioner, Sarah Rochira, is determined to ensure that those who use residential care services get the opportunity to voice their opinions.

She said recently: “When I launched my Residential Care Review last year, I made it clear that I wanted to give a voice back to older people and their families and for those who run our services to understand the day-to-day realities of living in residential care in Wales. The overwhelming response from across Wales provides a very robust starting point for this and I would like to thank everyone who took the time to complete the questionnaire, as well as those who helped to distribute it on my behalf, for the part they have all played in driving change for older people living in residential care.”

The second phase of the review is due to start in the spring and will involve visits, some unannounced, to 100 care homes throughout Wales. The Commissioner is also making steps to ensure that the voices of those with protected characteristics such as race, sexual orientation, religion or belief are also heard.

All of this is inspiring and is to be commended.  We at OPAAL would love to see similar activity in England. Not only do we need an Older People’s Commissioner but also a similar review of residential care. OPAAL members have been raising concerns for years about the situation of older people in some residential care homes. Our own Partnership Development Hub is currently focused on developing the evidence base for the provision of independent advocacy for older people in residential care. Not only is there a need for advocacy support for those already living in residential care but there is also a call to provide such support for those considering moving into residential care.

As a society we know we need to do more to safeguard older people in residential settings. Report after report has highlighted the issues. We want to be able to train and support those working in residential care to understand the benefits of getting independent advocacy involved in their day to day working lives. Not only would it benefit residents but it would also benefit care providers and their staff. Independent advocacy can support registered managers to meet inspection criteria and ensure that voice, choice and control are present for care recipients. It can also give staff an outlet to drive standards up and give much improved job satisfaction.

The time really is NOW! Let’s follow suit.

Marie McWilliams, National Development Officer, OPAAL

130,000 people diagnosed at 65 or over survive cancer for at least a decade

With the right treatment, over 65s can survive for many years after cancer – yet UK survival rates in older people are among worst in Europe

More than 130,000 people in the UK have survived for at least 10 years after being diagnosed with cancer at 65 or over, according to new research by Macmillan Cancer Support and the National Cancer Intelligence Network (NCIN).

This figure shows that, with the right care and treatment, over-65s in the UK can live for many years after cancer. However, if UK survival rates in this age group were not so poor this number would be even higher. Macmillan believes too many older patients in the UK are being assessed on their age alone and not their overall fitness.

The research, which is the first of its kind, also reveals that there are more than 8,000 people alive today who have survived for at least 10 years after being diagnosed at 80 or over.

There are almost twice as many long-term (10-20 years) female survivors who were diagnosed at 80 or over as there are male (5,481 compared with 2,995).

Gerald Shenton, 78, from Staffordshire says:

‘I was first diagnosed with renal cell carcinoma in 2000, and I am still here 13 years later, although I’ve suffered from every side effect in the book. I never really had any aftercare because I have always been treated as end stage. I was turned down for a possible treatment twice, being told unofficially that it was because of my age, although I did finally get some good emotional support through my hospital.’

A recent international study showed that for many common cancers (such as prostate, female breast, lung, stomach, ovary, kidney, non-Hodgkin lymphoma) the UK and Ireland have a lower five-year survival rate than the rest of Europe, and the gap is generally greatest for patients over 75. For example, the survival rate for lung cancer in the UK and Ireland is 9% worse than the European average for adults aged under 45, but 44% worse for those aged 75 or over.

Ciarán Devane, Chief Executive at Macmillan Cancer Support, says:

‘It’s wrong to write off older people as too old for treatment. With a proper assessment and appropriate treatment, our research shows that many older cancer patients can live for a long time and can even be cured.

‘While it’s good news that so many older people are benefitting from treatment, many thousands more could live longer if our survival rates for over 65s matched those in comparable countries.

‘The barriers to getting treatment – which include age discrimination and inadequate assessment methods – must be tackled now so more older people can survive cancer and live for many years.’

Dr Mick Peake, Clinical Lead of the National Cancer Intelligence Network, says:

‘It is vital that all patients receive the best and most effective treatment based on the nature of their cancer and their fitness for treatment and that chronological age alone is not the deciding factor. We know that cancer survival rates in older patients in many other countries are better than in the UK and ensuring optimal treatment at all ages is the way of tackling this issue.’

Macmillan Cancer Support is calling on all health providers in England to:

1. Adopt assessment methods that test a patient’s overall physical and mental wellbeing to ensure treatment decisions aren’t based on age alone.

2. Give health professionals the time and resources to complete specialist training in elderly care to ensure services are accessible and provide the best quality care irrespective of age.

3. Establish links with the voluntary sector, social services and teams specialising in dementia, falls and continence and address any medical, social, emotional or financial issues that may be preventing an older patient taking up treatment or that are impacting on their quality of life either during or after treatment.

No one should face cancer alone.

New partnership creates Dorset Macmillan Advocacy

Keri Harrison, Access and Community Support Manager of Help and Care and Mike Pochin, Development Manager of Dorset Advocacy are delighted to announce that  ‘Dorset Cancer Advocacy Service’ is now going be delivered in partnership with Macmillan and renamed ‘Dorset Macmillan Advocacy’.

The Macmillan Partnership Fund has secured the future funding of the service for the next three years.  These funds will enable Dorset Advocacy and Help and Care to recruit, train and support more volunteer advocates to work with older people affected by cancer in Dorset.

Ed Murphy, Senior Macmillan Development Manager, said ‘I am delighted that we have been able to support this excellent and much needed project.  We are looking forward to working with Dorset Advocacy and Help and Care to support people affected by cancer across Dorset’.

Mike Pochin said ‘This partnership will now enable us to fully establish cancer advocacy in Dorset, and to benefit literally hundreds of people’.

A delighted Keri Harrison and Mike Pochin

Kathleen Gillett

Dorset Macmillan Advocacy

Communication: It’s the name of the game!

Yesterday I took part in a Department of Health led webinar. Now a webinar, for those of you who’ve never heard of it, is when people log into their computers from across the country and take part in a presentation/learning event remotely. I had to access my computer then use my phone to call in so I could contribute verbally if necessary. Yesterday’s webinar was a learning event about Joint Strategic Needs Assessments (JSNA) and how the voluntary sector could work with local authorities to get the voices of local people heard. Now that might sound quite dry but actually it was really interesting.

What was really, and unexpectedly, lovely about yesterday was that I could see the names of the others around the country who were also taking part and discovered that a very good friend of mine who lives over 250 miles away from me was also taking part. It made me feel really close to her. What struck me was that I was sitting working at home  and so was she. We laughed privately about the fact that we could work in our PJ’s if we wanted to and no-one would ever know. Personally I draw the line at not getting dressed but it is nice to work with your slippers on…

Working from home has many advantages but also has drawbacks and the main drawback is isolation; no-one to talk to. So to get involved in yesterday’s webinar was really nice as for 2 hours I had almost 100 people with me while I worked. That’s when I got to thinking about our cancer advocacy service.

Our project advocates support older people affected by cancer on an ongoing basis. They provide a link between the older person and the rest of the world, a bit like that webinar did for me yesterday. They reduce the isolation of the older person by being there for them and ensure that lines of communication are open and that, like me yesterday, they can “call in” to the advocacy service and thereby be heard.

It’s wonderful to be a small part of a service which gives so much and I look forward to seeing our project develop over time into an asset that no local community feels it can afford to be without. Oh, and that’s where the webinar comes in again since it gave me an opportunity to think about how we can get local cancer advocacy services involved in their own local Joint Strategic Needs Assessments.

Marie McWilliams, OPAAL