From our annual joint conference: End of Life Care

Dr Joan RapaportThe Annual Joint Conference of the Social Care Workforce Research Unit and Making Research Count at King’s College London and Age UK London, with support from the British Society of Gerontology was held on 11 February 2016 at King’s College London. Joan Rapaport reports. (1,633 words)

By way of introduction, Professor Jill Manthorpe, Director, Social Care Workforce Research Unit, explained that the focus of the conference was on good practice in the day-to-day delivery of palliative and end of life care. The Unit’s Longitudinal Care Work Study had highlighted the importance of collaborative working between health and social care agencies and ensuring staff were prepared and supported when working with people in the last stages of life. In spite of all the bad news about social care being ‘in crisis’ and of poor quality, research has shown that four out of five people describe positive experiences: ‘We can work on the one in five’. Continue reading

Beyond measurable outputs: What matters in social work practice with older people?

Valerie D'AstousVal D’Astous is a PhD candidate at the Institute of Gerontology, King’s College London. (969 words)

As I walked past a small group of men for the second time, in search of the location, a cheery, ‘Can we help you luv?’ was offered. Paper in hand with the address, I knew I was close, but gladly accepted their offer. Two gentlemen ended up walking me around the corner to the place I was seeking, the Burrell Street Sexual Health Clinic. ‘Hope all goes well for you,’ one gentleman wished me, as I thanked them and said goodbye. I laughed as I entered the building, the site for the Making Research Count Conference: Rethinking Social Work Practice with Older People: Threats and Opportunities. I knew I was in for a great day! Continue reading

Men? Have your circumstances changed?

Valerie LipmanDr Valerie Lipman is Honorary Post-Doctoral Research Fellow at the Social Care Workforce Research Unit. (553 words)

We don’t see much about the lives of older men in the field of social care. The focus tends to be on older women, partly because women’s life expectancy is longer and perhaps, because in the care field, women are more visible in the traditional care settings, such as day centres and care homes. Have your circumstances changed?’, a triptych of duets between an ageing man and a boy of about 10-12 years of age, stages the daily routine of a single older man.

The three short pieces, about 15 minutes each, are set in sequence in a kitchen, living room and bathroom, showing a different older man managing life on his own. The performance takes place in the windows of a former furniture shop in a former shopping mall in Islington, north London. There’s no dialogue but just a series of noises of daily living. In the kitchen the man accidentally tips his rice crispies all over the floor, the sink gurgles, he thumps his knife into an onion, and butter splutters in a frying pan on the cooker all against the background of Radio 2. In the living room the TV blares out quiz shows, football and the Generation Game. And in the bathroom we hear the toilet flush, medicines fall out of the cabinet and imagine the scraping of shaving and the sizzing of false teeth in the glass. Continue reading

On compassionate care

Dr Joan RapaportDr Joan Rapaport reports on the seventh Annual Joint Conference of the Social Care Workforce Research Unit, Making Research Count, and Age UK London (with support from the British Society of Gerontology), which took place at King’s last week. (2,508 words)

In her welcoming introduction, Professor Jill Manthorpe (Social Care Workforce Research Unit, King’s College London) said the topic ‘Compassionate Care’ had been chosen to explore what we mean by compassion, where it might be needed in older people’s care, its place within the hierarchy of priorities and whether it concerns individuals or wider social relationships. She said the purpose of the conference was to find out:

  • Where is the passion in compassion?
  • Should we all be compassionate all the time?
  • Do all older people want compassion?

Continue reading

Where next for integration and funding?

John Woolham

John Woolham

Martin Stevens

Martin Stevens

It is estimated that the NHS faces a shortfall of at least £30 billion a year within a decade and possibly a deficit as high as £50 billion. Martin Stevens of King’s and John Woolham of Coventry University report on an event last month where experts debated funding and integration in health and social care. (1,369 words)

At a SSRGSSCR event on Integration and Funding of Health and Social Care held at the LSE on 18 June José-Luis Fernandez of LSE opened with a statistical review of the decline of social care service provision since the 1980s, which had become especially marked since 2008-09 with the contraction in public spending—despite increases in the numbers of older people over this period. While this could in small part be due to better targeting and more effective services, his conclusion was that there was a great deal of unmet need in the community. Continue reading

Letter from Sarasota: support services for older people

Valerie Lipman

Valerie Lipman

Dr Valerie Lipman is a social gerontologist and independent researcher. She reports here on support services for older people in Sarasota, Florida and particularly on the growing trend there toward ‘board-and-care’ arrangements in private homes. Could we see more of this in the UK?

I’m in the old age capital of the world. Sarasota on the Gulf Coast of Florida, USA boasts a total population of 386,147 of whom 32.5% are over the age of 65 years. And a third of that grouping is over 85 years. In the UK, the equivalent would be a town such as Christchurch in Dorset where 30% of residents are aged 65 and over. The national figure for the 65+ population in the USA is about 13%, and just under 18% for the State of Florida as a whole. This makes Florida fairly similar to the UK where the equivalent figure is just under 17%.

Older people come to Florida from across North America, and some from Europe to live here*. The sun shines most days, though it’s been a bit like England lately—teeming, non-stop rain and colourless skies. But freak days aside, it’s mostly a pleasure to wake up to.

With such a large older population the scope for delivering and trying out new support services feels almost endless. The general aim is to encourage ‘ageing in place’ and there are scores of home agencies, as well as ‘homemaker companion’ services, providing friendship and support. The former are registered services, the latter are not.

But just the same, many want or need the certainty and security of residential care. From continuing care retirement communities (CCRCs) to nursing homes there are innumerable private registered bodies in the Sarasota area offering services to older people. CCRCs offer a full range of housing choices and services on one campus—from independent living to assisted living to skilled nursing in an attached facility. The skilled nursing option costs $4,000-$8,000 per month in addition to entrant fees ranging from $150,000-$600,000. Assisted living facilities (support centres are called ‘facilities’ here) and memory (dementia) facilities/homes average around $3,000-$4,000 per month. There are also State-run services. Classically these are nursing homes, for which you have to demonstrate income below a certain level to qualify for what’s known as the Medicaid waiver.

But what do you do if you find yourself caught in the old eligibility trap of being too rich for Medicaid and too poor for the private homes? You could take a risk at one of a growing number of ‘private care homes’—also known as board-and-care homes. They are not the private homes of the UK that can serve any number of older people. Homeowners offer long-term personal and less regimented residence in a family friendly environment for one or two elders as a home business. These homes are not, however, regulated by the state.  They don’t have to meet any of the rigorous requirements that apply to group homes and assisted-living facilities (see Barbara Peters Smith, ‘Private-home care could become more common for elders’, Sarasota Herald Tribune, 23 January 2014).

They do, however, fill a huge need when it comes to cost. People will tend to hand over their pension to the homeowner to take care of them. No one knows how many of these homes exist. Most operate by word-of-mouth referrals and are private-pay only, but they are on the increase in an area where there is pressure on affordable places for the growing 80+ population. And like any other home the residents are dependent on the good will, attitude and behaviours of the owner/manager. Without family or friends to check out what’s going on, the scope for abuse is endless—at every possible level.

Yet, with some regulation and light-touch inspection, could this be added to the options of support for older people in the UK? It may be that Shared Lives is our take on this—an adaptation of what used to be called adult placement or adult fostering, but with the critical difference that Shared Lives arrangements are registered and regulated.

Sarasota is dealing with the complexities of an ageing population that we will have to meet in the UK in time. How to provide sufficient and varied enough facilities capable of offering security, safety and care in a homely environment that are not strangled at birth by hide-bound bureaucracy or slip into becoming exploitative ‘senior farms’?  Watch this space!

Dr Valerie Lipman is undertaking an investigation of how recent government changes in public services in the UK are impacting on BME elders. You can contact Valerie on valerielipman2003@yahoo.co.uk


*Projections from the University of Florida’s Bureau of Economic and Business Research (BEBR) show the percentage of the 65 and over population increasing to over 35% by 2020, and almost 40% in Sarasota County by 2030 BEBR, Florida Population Studies, Volume 44, Bulletin 159, June 2011.

 

My House or My Home? The challenges of ageing and housing

Joan Rapaport

by Joan Rapaport

Last week (6 February) the Social Care Workforce Research Unit hosted its sixth joint annual conference on the theme of older people. It is organised jointly with Age UK London and Making Research Count and, this year, supported by The British Society for Gerontology. The topic: housing and older people. Speakers included Jill Manthorpe, Vic Rayner, Jeremy Porteus, Simon Evans, Maureen Crane, Louise Joly and Maria Brenton. Joan Rapaport reports.

 

Why the interest in older people’s housing?

Professor Jill Manthorpe (Director, Social Care Workforce Research Unit) highlighted increasing interest in the role of housing and environment on health and wellbeing in later life. She pointed to the sudden (re)discovery of the triangle of health, housing and care contributing to quality later life. Poor housing and environments undermine the potential benefits of social care and technological advances. Depressing environments may foster depression and inaccessible or hazardous environments compound isolation. We have long known that dampness, mould and cold are bad for health; recent research also suggests that loneliness can be as bad as smoking on health. Whilst some commentators accuse older people of stealing the pensions of their younger counterparts and draining health resources, and denying them access to the housing ladder, the idea of a ‘jilted generation’ has scant evidence. If anyone had been jilted it was the generations who were promised ‘homes fit for heroes’ many of whom who spent their old age in cold, disabling and poor housing.

Jeremy Porteus

Jeremy Porteus

Drawing on a recent personal experience, Jeremy Porteus (Director, Housing, Learning and Improvement Network (LIN)) highlighted the problems people face when planning for old age. There is no central ‘Ideal Home Exhibition’ point from which to make the perfect choices, there are psychological barriers to facing the future and a decision may have to be made in a crisis. Although the government is greatly concerned about the ageing population, the Select Committee on Public Service and Demographic Change (Lord Filkin, 2013) found that the housing market is delivering much less specialist housing for older people than is required and that national and local government and housing associations urgently need to make plans. Jeremy commented that if we are to build better homes then we also need to shape communities: making this more just a question of supply and demand.

Jeremy described the benefits deriving from purpose built projects and the emerging evidence base for positive outcomes. As just one example, people who were lonely with high needs had moved into Extra Care accommodation that had been funded by the Department of Health (DH). Within six months to a year many had experienced improvements in their wellbeing, ability to self-care and autonomy, creating savings in health and social care budgets. Extra Care projects are provided in a wide variety of ways including community led housing, cooperatives and cohousing as well as sheltered housing, retirement villages, almshouses and homesharing. Jeremy exhorted conference participants to join Housing LIN to keep abreast of strategic developments and opportunities and service innovations. Housing LIN is the leading ‘learning lab’ for a growing integrated network of housing, health and social care professionals in England involved in planning. As such, it is at the forefront of policy, research and practice developments and is a member of the Prime Minister’s The Dementia Challenge health and care champion group.

Vic Rayner (Chief Executive, SITRA) questioned the source of the ‘drain’ perceptions of older people in society. The evidence shows that contrary to these ‘doom and gloom’ predictions, people living longer lives are an asset to their communities and families, many working as volunteers, providing neighbourly support and helping with childcare responsibilities.

Vic Rayner

Vic Rayner

And the pictures of older people being drains on taxpayers are exaggerated, she observed. Close analysis of available data illustrates that the average annual unit cost of sheltered accommodation is just £311.10 – an amazing bargain! An investment of £198.20 in sheltered accommodation yields a saving of £646.90; of £32.40 in sheltered accommodation for older people with higher needs, savings of £123.40 and older people receiving floating support £97.3 and £628 respectively. Service user objectives of having access to assistive technology, security of tenure, personal security, greater autonomy and contact with family and friends are largely met. Yet supported provision for older people when compared to other population groups, is meager and may now be additionally under threat from local authority budgetary constraints.

‘On the Pulse’ case studies show how good practices in housing and health delivery can achieve good outcomes in:

  • Transferable care packages from housing to hospital and vice versa
  • Supporting re-ablement through telecare
  • Creating solution orientated partnerships across traditional health, social care and housing sectors

Vic highlighted the importance of commissioners’ valuing what matters to service users and including in their audits ‘soft’ and ‘hard’ outcomes, rather than focusing on a set of outputs defined by funders. She endorsed views that deeply ingrained attitudes towards older people needed to change.

Dr Maureen Crane and Dr Louise Joly (Honorary Senior Research Fellow and Research Fellow respectively at the Social Care Workforce Research Unit) drew on their current research on the housing and support needs of older homeless people.

Louise Joly

Louise Joly

Emerging findings from this unique study investigating what has happened to homeless people since they were rehoused five years ago demonstrate the potential problems of withdrawing support. Their research suggests that homelessness amongst people aged over 50 years is increasing, although no accurate figures are available. Homelessness in later life happens for a variety of reasons, such as breakdown in long-term marital or partnership relationships, death of a parent or spouse as well as mental health and substance misuse problems. Some people have poor budgetary skills and become evicted from the former family home. Some have literacy difficulties. While homelessness can be short term, so far nearly half of their research sample had been homeless for more than five years before being rehoused.

In this study, participants were first interviewed six months after they had been rehoused. Most, by far, not surprisingly, were glad to have been rehoused, regarded their accommodation as ‘home’, valued their privacy and control, and felt safe and comfortable. However, almost half were in debt. Significantly, those in sheltered accommodation were less likely to be worried or to mention they felt depressed.

Maureen Crane

Maureen Crane

Five years on about a third were still in their original accommodation. Of the minority who had moved, some had changed to live in more supported accommodation. Of those in their original accommodation, case examples highlighted struggles that had increased once their support workers had been withdrawn. These people were living impoverished, isolated lives. Unrealistically, some with health problems were being required to look for work. Maureen had been unable to interview one individual, in a great state of despair about her finances, until she had helped her to complete an application for welfare benefits. Some of the questions were difficult to understand. The form was 57 pages long and had to be printed: for this the internet café was the only option. The individual, who had relied on friends for money for two months, had to pay £8 from her benefits’ for her application to be printed!

This research is indicating that many older homeless people want permanent accommodation but many require supported or specialist living arrangements. The support needs of homeless people can fluctuate once rehoused and some do not seek help when faced with difficulties. There is currently a lobbying vacuum following the demise of the UK Coalition on Older Homelessness in 2010. Maureen and Louise highlighted the need for a new campaigning group to raise awareness of the particular needs of older homeless people.

Next to present, Dr Simon Evans (Senior Research Fellow, Institute of Health and Society, University of Worcester) asked what Extra Care housing offered older people? Drawing on emerging findings from the ASSET research project (funded by NIHR School for Social Care Research), Simon explained that Extra Care housing covers units for rent, purchase and includes some retirement villages. Extra Care is typically characterized by having facilities that enable social interaction, activities, outside support and the ability to buy in flexible care packages. The model provides many opportunities to meet the diverse needs and circumstances of older people. For example, the characteristics and needs of residents are wide ranging. Schemes may rely on multiple funding sources, multiple partners and multiple commissioning agencies. There is a range of financial and legal considerations such as for rent, or purchase, and charges for service, support and/or care packages. There are many types of building options such as ‘top of the market’ facilities, specific age friendly designed complexes, or converted council tower blocks. The literature on social care and support in housing for older people is meager.

When planning for their ‘ideal home’ consumers may be faced with differing local authority arrangements, the effects of welfare reforms and budgetary constraints, new models of commissioning and different approaches regarding levels of need. Simon explained that agreement on priorities and tendering arrangements with local authorities preoccupy commissioners. Key factors regarding the commissioning of social care in housing include the relationship between the housing and care provider, the building type, layout and location, the facilities on offer, tenure and letting policy and the mix of care needs required by the residents. However, ideas about what facilities are wanted by people with high needs are changing. As one example, meals and restaurants on site are proving popular but they may not meet everyone’s preferences.

Despite these complications, Simon ended by highlighting some of the benefits of extra housing such as:

  • Serving as community hubs for services
  • Supporting couples to stay together (in contrast to traditional models of residential care)
  • Promoting independence
  • Potential for saving money when compared with the costs of care homes.

Concluding the day, Maria Brenton (Project Consultant to Older Women’s Cohousing Company) outlined the concept of cohousing: which essentially aims to combine personal autonomy with community in old age. Maria explained that there are a small number of cohousing schemes emerging in England where people are coming together with the intention of living in a community and a commitment to mutual support. They share values and each agrees to share responsibility for the group as a whole. Each ‘cohousee’ has her or his own accommodation and own front door. The model is well established on the continent but is starting to gain some momentum here.

Maria Brenton, Jill Manthorpe and Simon Evans

Maria Brenton, Jill Manthorpe and Simon Evans

Maria highlighted the potential strengths of cohousing particularly in respect of combatting loneliness ‘which is probably a killer’. As people come together to design, build, develop and manage the project, they get to know each other well. Cohousing offers the prospect of good social contact, opportunities to share skills and the benefits of old fashioned communities with help at hand right next door.

In the UK 14 schemes are in the pipeline. The scheme she is involved in ‘OWCH’ (Older Women’s Housing Cooperative) is likely to be the first of its kind in the country. However, the model is very new to commissioners and cohousing pioneers face many challenges. A shift in perspectives is required.

For social workers and social care practitioners there were several key messages from the day

  • Loneliness is a potential killer – it is important to consider when thinking about outcomes. The contribution of housing and the built environment to contributing to loneliness should be assessed and addressed.
  • Attitudes about ageing and older people need to change and social work can play its part in this by working with older people and their organisations.
  • Extra Care is often cost effective and outcomes are often good; social workers should be familiar with what is on offer and its opportunities.
  • Not providing Extra Care may cost the public purse more so local investment in it could be supported. As well as providing construction jobs, Extra Care offers local work.
  • There is wide variety of supported housing schemes and social workers need a local ‘map’ to know what people might consider or should be confident that there are local information and advice agencies that can provide person-centred services.
  • The potential of older people to design their own schemes has not been realized; social workers can put people in touch with national bodies.
  • The importance of older people engaging in national and local consultations to improve their housing and wellbeing is one that social workers can convey in community development work.

This conference was the 6th annual joint event (CPD certified) held by Making Research Count at the Social Care Workforce Research Unit with Age UK London. This year the conference was supported by the British Society for Gerontology. It was held on 6 February 2014 at Henriette Raphael House, Guy’s Campus, King’s College London.

Dr Joan Rapaport was, until recently, Visiting Research Fellow at the Social Care Workforce Research Unit, King’s College London and is a lay member of the Mental Health Review Tribunal.

Conference photographs: Cliff Chester

For more on the conference (including presentations) go to the Event website.

For your attention:                                                                                                            Gordon Deuchars, Age UK London, stated that the Mayor of London had issued a Public Consultation on a New London Housing Strategy. This also concerns housing for older people. The consultation ends on 17.2.14. Please contribute to this consultation: www.london.gov.uk/priorities/housing-land/consultations/draft-london-housing-strategy  

Is it time to have an ideal home exhibition for the retirement housing sector?

Jeremy Porteus

Jeremy Porteus

Next week sees the 6th Social Care Workforce Research Unit annual joint conference, presented with Making Research Count and Age UK London. This year’s topic: My house or my home? The challenges of ageing and housing. Here, Jeremy Porteus, Director of the Housing Learning and Improvement Network and one of the speakers at the conference, questions whether we pay enough attention to quality and older people’s preferences when we build retirement housing.

The idea might seem vaguely frivolous when the attributes of high-quality specialist housing for older people include such prosaic but vital considerations such as adaptations and access.

But, for all the aspirational frippery that surrounds the annual Earls Court jamboree, it does have the virtue of putting designers, housing developers and builders in touch with their potential clients.

The Ideal Home Show website notes that ‘the main stunning feature of the Ideal Home Show is our fully built show homes’.

Influential documents such as ‘Lifetime Homes, Lifetime Neighbourhoods’ and both the ’HAPPI‘ reports have been important contributions in raising the profile of specialist housing and emphasising quality.

However, so far, much of the resulting discussion has been about quantity and demographic challenges, and virtually exclusively within professional circles. While this has been necessary it is not ideal.

We need to square up to the challenges and move the debate on so that it focuses even more on quality and, most importantly, shapes a conversation that includes the customers—older people.

By engaging with consumers and potential consumers, developers, construction companies, architects and housing, social care and planning professionals can redress the continuing British aversion to specialist retirement communities.

Market research, for example Demos’ recent thinkpiece, shows that well over half of those over 65 actually want to downsize, with around a quarter interested in a retirement property.

We all need to be talking to those ‘interested’ in a retirement property and those older people who want to downsize, but cannot see themselves in a retirement property.

This dialogue needs to highlight the best of specialist housing and the quality and design aspirations set out in projects such as HAPPI. However, it must also involve professionals and the sector listening to what older people want. What I have called a ‘living lab’.

The danger is that one day society will wake up to the fact that we need tens of thousands of retirement housing units. In our rush to meet that demand we may well repeat the mistakes of the post-war housing developments, including those that can be seen in some of the less desirable sheltered housing built in the 1960s and 1970s.

There was much to admire about the scale of ambition in the housing programmes of the three decades after 1945.

We need to match that ambition, but also capture the aspirations of older people by asking them just what would be their ideal home?

Jeremy Porteus is Director of the Housing Learning and Improvement Network and Chair of the Homes and Communities Agency’s Vulnerable and Older People Advisory Group. He speaks at the conference, My house or my home? The challenges of ageing or housing on 6 February. A handful of places are still available. Twitter hashtag for the conference #olderpeople6

Follow Jeremy on Twitter @HousingLIN

Follow the Social Care Workforce Research Unit on Twitter @scwru


Dreaming Spires: reflections on the 42nd British Society of Gerontology conference at Oxford

John Miles, PhD candidate with the Centre for Social Gerontology at Keele University and researcher on the Social Care Workforce Research Unit’s Rebuilding Lives study, reports from the British Society of Gerontology conference held earlier this month.

Beginning on Wednesday 11 September around 500 people turned up for the three days of the 2013 British Society of Gerontology (BSG) conference, held this year at Keble College, Oxford, and hosted by the Oxford Institute of Population Ageing. A combination of the Institute’s unique international connections, the prestige of the university itself, and the growing diversity of age-related research, came close to doubling the BSG’s annual attendance. Three linked events drew in well over 100 people in advance on the Tuesday. The turnout required the continuous use of two sites with some occasional overspill on to a few more. Delegates either got an unusual amount of exercise or found themselves grappling with the painfully slow evolution of disability access in a great, listed, Victorian building!

Despite such challenges the conference inspired a great deal of warmth and enthusiasm and its eclectic programme was a constant source of surprise and intrigue. Gerontology is something of a conglomerate, and by its very nature often interdisciplinary. Sessions tended to be grouped by theme rather than discipline, so that a presentation about a survey of 1000 people could be followed by an ethnography of work with ten people in a nursing home. But therein lies some of the conference’s power: as a social gerontologist with sociological inclinations, for example, I found myself in a couple of rich, and productive, post-match discussions with social psychologists. At the ‘Emerging Researchers in Ageing’ event on the Tuesday, cellist Claire Garabedian’s account of her research into playing music to people with dementia was exemplary. She identified herself as a musician and not a therapist. She explained how she had filmed her encounters to supplement and contest her subjective experience of playing one-to-one to individuals in their rooms. She accounted for the complex processes to which her presence in the home gave rise through her dealings with the staff, and with other residents. And she reported a benign impact for many of her auditors.

The cross-currents of such an account with the second plenary at the main conference the following day were significant for me. Literary scholar Helen Small showed four clips from the award-winning documentary Room 335, where the then 19 year-old documentary film-maker Andrew Jencks recorded his stay in a huge Florida nursing home over a period of several weeks. Jencks’ approach might have its drawbacks but it radically demystified the boundaries that supposedly make institutional lives so inaccessible. Moreover, as Small pointed out in a compelling analysis, Jencks’ film established in sociological terms the existence of a robust form of mutual support operating among the residents themselves, none of whom showed any interest in being looked after by their families. Su Su Liu, alongside whom I presented a couple of days later, identified something similar in the outlook of the sixty people she interviewed who attend elders’ community centres in Hong Kong. Friendship among these resilient survivors is more a performance of rhetorical support and social engagement than a pursuit of intimacy or personal trust. In the same session the family sociologist Eric Widmer from Geneva drew on a Bourdieusian perspective to examine the distribution of personal resources within older people’s family networks. This, he argued with me later, is where the social capital that counts is to be found, rather than among the vaguer configurations of ‘community’ into which Robert Putnam’s Bowling Alone has steered so many government-promoted behaviour change initiatives during the last decade. Bola Amaike and Funmi Bammeke from the University of Lagos presented papers about care and support in Nigeria. Their uncompromising demand for men to change their attitudes and expectations underpinned a bold if not quite credible attempt to reconcile the restoration of filial piety with the overthrow of patriarchy!

At the plenary sessions social gerontology itself was interrogated: in its distant relationship to the biological sciences by distinguished stem-cell researcher Paul Fairchild, and to the humanities by Small, and then for being insufficiently ecumenical in its inter-disciplinary relationships at policy level by the World Health Organisation’s John Beard. Whatever the objective justification for these critiques such challenges are welcome and appeared to be well-received. From my perspective, it is our too limited exchanges with economics and political science that remain of greatest concern. Gerontology needs to play a fuller part in challenging government inertia, and contesting destructive corporate agendas, as we plan for, and live in, our ageing society.

John Miles, who works on the Social Care Workforce Research Unit’s Rebuilding Lives study (funded by NIHR School for Social Care Research), has just completed six years on the BSG executive and is a PhD candidate with the Centre for Social Gerontology at Keele University.

Several Unit staff are members of BSG – we organised a symposium on dementia where our mental capacity study work was presented and Unit director Jill Manthorpe chaired a further symposium.

The value of advocacy support for older people affected by cancer

In a guest post Kath Parson, Chief Executive of the Older People’s Advocacy Alliance (OPAAL), writes about a project supporting older people affected by cancer.

‘Cancer, Older People and Advocacy’ is about supporting older people affected by cancer to find their voice and say what it is they want. Evidence from Macmillan Cancer Support, our project partner, and the Department of Health indicates ingrained age discrimination in cancer services: ‘Older people with cancer receive less intensive treatment than younger people. …… there is increasing evidence that under-treatment of older people may occur

image001We’re doing our best to change that by recruiting, training and supporting older people who have themselves been affected by cancer to become peer advocates. We’re working on the basis that those who’ve lived through the experience of cancer, either because they or someone close to them have had a cancer diagnosis, are best placed to empathise and support others in the same situation.

I’ve also been affected by cancer and lost relatives and very close friends – so I can relate to a lot of the issues that people have and some of the unfairness that happens… I’m not afraid to challenge. That’s the kind of thing people haven’t got when they have an illness. All those strengths are taken out because of the day to day – the appointments, the pain, and the personal issues they have to deal with. Advocate

image003

Where we’ve struggled so far has been in helping health professionals understand that there might be a problem in cancer services for some older people. Despite the evidence there seems to be a reluctance to refer to independent advocacy. Maybe it’s because they don’t like being questioned or maybe they simply don’t see the need. Whatever the reason, it is a problem. One advocate explains:

That was a difficult session, particularly because there were three consultants in the room. The consultants were quite apprehensive really, I would say, about me being there… One of them actually did ask what my role was, which I explained. I emphasised that my role was not to make decisions for my client. It was to help him to understand the situation, what was on offer, to help him to make some informed choices, and decisions about his treatment and that was OK after that.

To find out more about Cancer, Older People and Advocacy, check out our blog.