National Cancer Champions Board – working hard in London

On the 8th July I had the pleasure of chairing the National Cancer Champions Board meeting. This is an amazing meeting of people most of whom volunteer their time and expertise to come together to advise and help set future direction of our Flagship Cancer Older People’s Advocacy Programme. This was our twelfth meeting and to my shame I realise I have never thanked them publically for their work. Today I decided to put that right. We most often feature the stories our our volunteers or the people they so ably support, yet this group are very important to our work.

The Board is made up of people who either sit on our Delivery Partners Local Cancer Champions Board or have some knowledge, expertise and interest in supporting older people affected by cancer achieve better lives for themselves.

Standing left to right.

Mig Muller (Macmillan) Sian Payne (LGBT Foundation) Sam Bond (IMPETUS) Carol Wood (ICANN)
Deborah Garrity (Age UK Northumberland)

Seated left to right

Sue Perry (Age UK Bristol) Antonio Quadrucci (OPABC) Anne Whitmarsh Neil Whitmarsh (SPAC)

Seated right to left

Ron Clayton (OPABC) Kath Parson (OPAAL CEO) Monica Dennis (Age Connects Cardiff) Andrew Jazeaeli (Macmillan)
Keith Beswick (Oxford Advocacy) Dawn Porter (KPAIS)

We discussed issues covering the success of the partners supporting those in need by celebrating a recent film we have made which features a wide range of stakeholders speaking about the benefits of our work to older people, our volunteers and health and social care professionals whose own work we seek to complement and support. Watch this space for the release of this film next month.

However much of the meeting wrestled with some of the challenges we face. These include bringing our work to the attention of the wider public, other health and care professionals and in particular commissioners, our need to recruit and train new volunteers and finally how to persuade our colleagues working in health settings to refer older people who need support to our service. This latter is a constant challenge, one which we are addressing with a wide range of strategies. Many of these strategies are fed into the board from our LCCB members who readily share the successes they have achieved for the benefit of all our partners. It’s a great example of people sharing their experiences, methods and activities which work. The meetings are hosted and serviced by Macmillan Cancer Support who also share their developments in working with the older people they support. Special to Anna Broomfield who takes the notes for our meetings and took the photograph above.

I always come away from these meetings reinvigorated, having learned something new and deeply grateful to be part of such a committed group of individuals. Thank you ALL for your time, patience and willingness to give so freely of your expertise and knowledge, without you our COPA programme would not be the success it is today.

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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

Getting justice for a war veteran unlawfully detained by the Council

Peter is a 91-year-old veteran of the Second World War. Peter has health problems, including dementia, but he likes living in his own home. He sees friends and enjoys looking after his pet cat Fluffy.

Some of Peter’s friends became concerned that Peter was being financially abused and they were worried about his ability to look after himself. His local council then took action which meant he was held in a locked unit for 17 months. Although the records said Peter went with them voluntarily, he was clearly reluctant to do so, and distressed. Facts are disputed but he is said to have been wearing his dressing gown at the time, without trousers or pyjama bottoms.

This case went to Court, where it was decided that the council’s treatment of Peter amounted to breaches of his human rights to liberty and to respect for private and family life (Articles 5 and 8 of the HRA). These breaches were said to be made worse because had they not happened, Peter would have continued to live at home, where he was happy, with support. The council ended up giving Peter £60,000 in damages for false imprisonment. But most importantly, Peter was able to return home, reunited with Fluffy and his friends. He now has the right care support package and is reportedly happy and contented.

To read more stories like this visit https://www.bihr.org.uk/

Cancer Equality launches Ethnic Minority Cancer Awareness Month 2015

Cancer Equality launches Ethnic Minority Cancer Awareness Month 2015 – to raise awareness, empower communities and save lives.
National charity, Cancer Equality,is launching this year’s Ethnic Minority Cancer Awareness Month (EMCAM) in July, with the aim of raising awareness of bowel cancer and the importance of screening among Britain’s ethnic minority communities. The campaign also aims to help individuals take up the services that are available to them – with the aim of saving lives.

The campaign is supported by Public Health England and by Bowel Cancer UK, with the charity providing speakers and resources.

Someone in the UK is diagnosed with bowel cancer every 15 minutes. That’s 33,218 men and women every year, with 12,871 cases proving fatal.

Ethnic minority communities, which make up 14% of Britain’s population, can be particularly at risk, because awareness of cancer and uptake of some cancer services, including screening, are lower in those communities. That means people from ethnic communities tend to be diagnosed when the disease is more advanced, which can lead to poorer survival rates.

EMCAM 2015 aims to tackle those issues, by working with four regional organisations – Croydon BME Forum (London), Black Health Initiative (Leeds), Birmingham Empowerment Forum (Birmingham) and CanSurvive (Manchester).

By working with local organisations that already have close links with ethnic minority communities, Cancer Equality aims to reach as many people as possible throughout the campaign, across the South East, West Midlands, North and North West.

With support from Cancer Equality and Bowel Cancer UK, the four regional organisations will run a range of awareness raising events and activities during EMCAM, aimed at different ethnic minority communities.

Encouraging news re Dying at Home

New information collated by the National End of Life Care Intelligence Network

Published: 26 June 2015

PHE’s National End of Life Care Intelligence Network (NEoLCIN) works with partner organisations to collect, analyse and present end of life care intelligence from a wide variety of sources. This report summarises the key findings of the network and its partners over the last year. Although much of the research has been published previously, this is the first time it has been brought together in one place.

New findings show there is a growing understanding within the health sector of what is important to people at the end of life.

Key findings from the report include:

The proportion of people dying at home or in care homes continues to increase
Patients with an Electronic Palliative Care Co-ordination System (EPaCCS) record and those receiving palliative care services such as hospice at home, Gold Standards Framework or Macmillan services are more likely to die in the place of their preference
Two in five people with dementia die in hospital, indicating that the trend towards increasing hospital deaths for people living with dementia has reversed.

Factors most importance to people at the end of their life were; having pain and other symptoms managed effectively, being surrounded by loved ones and being treated with dignity. This is entirely consistent with what older people tell our Advocates they want to achieve when describing a ‘good death’.

More GPs are having conversations with people about their end of life care wishes but 25% still say they have never initiated such a conversation.

Download the report, http://www.endoflifecare-intelligence.org.uk/view?rid=872

Supporting an older woman strapped into her wheelchair against her wishes

This is the latest in a series of blogs illustrating how the use of our basic human rights can make a real difference to the quality of life for individuals.

During her afternoon ward round at a London hospital, a consultant came across an older woman, Mrs. Jones, who was crying out in distress. Mrs. Jones was in a wheelchair and when the consultant looked more closely, she discovered that she had been strapped in, and this was the reason for her distress. The consultant asked staff why the woman was being restrained in this way. They explained that they had strapped her into the wheelchair to stop her walking around, because they were worried she might fall over and hurt herself. The consultant told staff that while their concerns were understandable, strapping Mrs. Jones into a wheelchair for long periods was not an appropriate response, because her human rights, and in particular her right to be free from inhuman and degrading treatment (Article 3) had not been taken into account. Staff quickly agreed to unstrap Mrs. Jones and, after she was assessed by a physiotherapist, they were encouraged to actively support her to improve her mobility.

To learn more of our colleagues work please visit their web site here https://www.bihr.org.uk/

Government urged to invest £5.2bn in preventative health and social care

OPAAL welcomes this new report commissioned by the LGA calling for an increased investment in preventative health and social care.

The government urgently needs to invest £5.2 billion over the next four years to overhaul the health and social care system, according to a report commissioned by the Local Government Association.
The report by Ernst and Young calls for the government to divert £1.3 billion from the budget each year over the next four year to develop a new health and social care system.

Data shows that around 30% of health and care service users take up over two-thirds of the health and social care budget.
The proceeds from the transformation fund have been recommended to be used on preventative measures, especially for long-term conditions which cost the health system an estimated £88 billion per year.
The LGA report suggests that the extra financing could keep elderly and disabled out of hospital and healthier for longer rather than putting money into the most serious conditions so that the long term state of the health and social care system is improved.
Cllr Izzi Seccombe, Chairman of the LGA’s Community Wellbeing Board, said: “We need an urgent and radical change to the way in which we provide care for the elderly and disabled.
“It is social care services which keep people out of hospital and living in the community for longer. Social care and health are two sides of the same coin – it is quite clear that without adequate funding, social care simply cannot alleviate the pressure on the NHS.
“The Government needs to invest money in a system which will be there to look after people now and in the future, and commit to a long-term strategy to ensure that people get the care they need.”

We believe this includes ensuring that all older people who need independent support to access the care they need and want to maintain wellbeing deserve to access this support, and if necessary independent advocacy to ensure their voice does not get lost in the system.

Access the full report here. http://www.local.gov.uk/documents/10180/6869714/Creating+a+better+care+system+June+2015/0692d75a-5c26-4b85-a2b5-9e7dd59b455e

Preventing an older woman being moved from hospital to residential care against her wishes

Janet was staying in hospital after a stroke. She had been a prisoner of war in Japan during World War Two, which had led to some mental health problems. Hospital staff saw Janet re-enacting experiences from her time as a POW, like washing her clothes with rocks and hanging them out to dry on the hospital fence. After some time, hospital staff wanted to move Janet to a care home, as it would be cheaper to provide care there.

Janet’s advocate, Steve, was concerned about this decision as Janet had said she wanted to return to her own home. The hospital was pushing for the care home placement because of the mental health issues Janet was displaying. However, working with Janet, Steve thought that it was being in the hospital’s institutional setting that was causing her to relive the past, and that a care home would make things worse.

Steve accessed human rights training from BIHR. During his advocacy with the hospital and local authority Steve was able to refer to Janet’s human right to respect for private life under the Human Rights Act (Article 8), which includes having a say in decisions that affect us, and protecting mental well-being. He explained how putting Janet into residential care could compromise her human rights, whereas supporting her to return home as she wanted could respect her human rights and help her recover. Following Steve’s human rights advocacy, the local authority decided it was able to support Janet’s care at home.

In addition to protecting Janet’s human rights, Janet was supported to contribute to her own decisions about where she should live and is a classic example of how advocates work to ensure people’s voices are heard in decisions affecting their lives and well being.

This story was provided by our amazing colleagues working at the British Institute for Human Rights find our more about their work here https://www.bihr.org.uk/

Ageing without children – who will speak up for those without family?

I recently had the pleasure of meeting with Kirsty Woodard Founder of Ageing Without Children, AWOC. Kirsty really opened my eyes to the very great need for Independent Advocacy for this group of older people. We are now exploring how we can work together to provide independent advocacy support to this largely unseen group of people. Below is a blog written by Kirsty to help raise awareness of AWOC’s work. If you are interested in finding out more about AWOC or supporting work in this area please do contact Kirsty directly, her contact details are below.

“Not so much hands-on care as Independent Advocacy, championing me, and being sure to have my best interests at heart”

Earlier this year, AWOC carried out a survey of 400 people ageing without children. Their biggest fear? Having no one to speak up for them or act in their best interests when the time came that they could no longer do it for themselves. These comments were typical

“I will have no one to look out for me and my interests as I am currently doing for my father with dementia. The system is not geared to doing this and assumes there are family members”

“nobody to speak up for me when I cannot speak up for myself especially where health care is concerned”

“you hear terrible stories about abuse in care homes – often it is only exposed because the children or grandchildren become concerned and can prove what is happening”

At least 1 in 5 people over 50 currently have no children (we only have the statistics for women as none are kept on men) and by 2030, 2 million people will be over 65 without adult children.

Why does this matter? It matters for two main reasons. Firstly, the state assumes older people have family and there is an expectation that they will be involved with offering care and support. Indeed, the current government have suggested that families should take more responsibility for older people as the state is rolled back.

“In those countries, when living alone is no longer possible, residential care is a last rather than a first option…..If we are to tackle the challenge of an ageing society, we must learn from this – and restore and reinvigorate the social contract between generations.
And uncomfortable though it is to say it, it will only start with changes in the way we personally treat our own parents and grandparents.” Jeremy Hunt,
Health Secretary in Speech to National Children and Adults Services Conference.

To be fair, the evidence shows that most of the time families especially adult children do intercede though whether of course they should have to plug the gaps in a failing social care and health system is another matter. However, the social care and health system is not geared up to deal with those who do not.

Secondly, society as a whole in the UK remains resolutely ageist; while sexism, racism and homophobia are deemed unacceptable, derogatory comments and assumptions about older people pass by without remark. Older people as a whole are seen as a burden on society, lacking value or importance. Abuse and poor treatment of older people has also been much in the news; from 15 minute home care visits, the scandal at Mid Staffordshire hospital to Panorama to ‘protecting our parents’, there has been a stream of reports highlighting appalling treatment of particularly frail and vulnerable older people. In the light of this, it’s no real surprise that people fear ageing without children and worry about being ignored and badly treated.

For those people ageing without children, Independent Advocacy will be absolutely crucial. However most local authorities are struggling to fund advocacy with money often only available for statutory provision, IMHA, IMCA, Complaints Advocacy and since April 1st 2015 Advocacy under the Care Act 2015. Broader based or long term independent advocacy is under more and more threat. This is a real worry when it’s clear that the need for it is going to grow considerably. This will need to be addressed so that people can age without children without fearing that they will be ignored and overlooked.

“I wonder, who will be shouting for me? Or will I be the old lady dying alone in a hospital bed because no one cares”

Kirsty Woodard
Founder AWOC
http://www.awoc.org
ageingwithoutchildren@gmail.com
@awocuk

New Guide to help personalise care services through Individual Service Funds

I welcome this new guide which has been published to help councils and providers meet the Care Act 2014 guidance on Individual Service Funds (ISFs).
The Guide http://bit.ly/1N1NQxV Individual Service Funds (ISFs) and Contracting for Flexible Support – is aimed at council commissioners and providers, and sets out how councils can contract flexibly with a service provider to meet a person’s needs, and contract in a way that gives the person more control over their own support.
ISFs help people with care needs to have flexible, personalised support, tailored to individual preferences without having to manage the responsibility of cash direct payments. Advocates working on the COPA project will now be able to access this guide to help them support those most in need. I am often told stories of some of the people we support who desperately want to remain living in their own homes, with the support of Peer Advocates armed with this new type of resource it should give power to their elbow to ensure people are able to plan and receive the care they want and need to help maintain wellbeing.
It means people and families can choose to live in their own homes, with their own support and using their own budgets, while the councils that commission those services work differently with community organisations and providers of services to improve outcomes for people they serve and reduce costs.
United Kingdom Home Care Association Chief Executive and TLAP Board lead for Self-directed Support Bridget Warr says: “Individual Service Funds are a valuable and currently underused alternative where people don’t want to take a Direct Payment.
“This helpful guide encourages commissioners and providers to ensure they are available and effective in helping people obtain the support they need to live at home.”
Uptake of ISFs are fairly limited to date, but the guide recommends they should be the default option when a person does not want or is not able to manage a cash direct payment. The Guide also recommends that councils contract with providers of services in a way that enables them to be more accountable to people who use services and more responsive to their needs.