Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Human rights and advocacy

Emma Voglemann, a volunteer for the British Institute of Human Rights (BIHR), writes about why human rights are so important for advocates:

For advocates, human rights are a shared language of duty and respect that can be used to achieve good outcomes out of court. The Human Rights Act means that public authorities have a legal obligation to respect human rights when they make any decisions involving a person’s life. Advocates can raise human rights in discussion with a person or public authority and they can use human rights to give older people a voice in decisions about their own life, even if they may not have capacity for that particular issue.

BIHR

BIHR have worked with older people and advocates to help them understand and benefit from human rights. In our Guide for Older People we encourage older people to know how to utilise their human rights by recognising situations where rights may be at risk and how to seek help. Through our partnership work, those we work with have used the Human Rights Act to achieve real outcomes.

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Human rights advocacy in real life: Using the Human Rights Act to challenge blanket use of tilt-back chairs in a nursing home.

Laura is a consultant who works with older people, and having worked with BIHR is a keen proponent of human rights in NHS services. She was visiting a nursing home in London when she saw several residents were effectively trapped in special ‘tilt-back’ chairs. The chairs were being used because they stopped people in the home from trying to get up, falling and hurting themselves.

Sadly, this meant many older people who could walk weren’t able to get up and out of the chairs. Instead they had to wait for staff to come and get them out of the chairs so they could go to the toilet or go and get something to eat. The residents at the home who were previously very independent could no longer choose what they wanted to do with their days, and because they couldn’t walk around very often, they started to find walking very difficult.

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Laura was concerned this practice in the home raised human rights issues. She talked to the residents who were kept in the chairs, who told her they felt their dignity and independence was being taken away from them. Laura realised that by not allowing the residents who could walk the freedom to move around, their dignity and autonomy, protected by the right to private life in the Human Rights Act (Article 8) was being risked. She was also concerned that for some of the residents, it might even be inhuman or degrading treatment, which is never allowed under the Human Rights Act (Article 3). Laura raised her concerns with the staff and using human rights language they were able to see that treating all of the residents the same in order to protect the few who needed the tilt-back chairs was not appropriate. Residents who could walk were no longer placed in the tilt back chairs and staff encouraged them to start using their walking skills again.

BIHR’s project work with older people and advocates 

Through partnership projects with older people’s groups, including local branches of Age UK, we have worked to empower older people through training around how to use the language of human rights in their daily lives and to influence service delivery and policy.  

Through this work one group of older people in Derby made a DVD on the issues facing older members of the lesbian, gay, bisexual and transgender (LGBT) community who live in residential care, which received extremely positive feedback. (Watch the film here). Another group looked at the lack of public toilets and transport links, which helped them collaborate with other groups affected by this issue, such as disabled people and mothers with young children. They raised awareness about this issue and engaged with local officials.

If you’d like to find out more about our work with older people, or to find out more about how advocates can use human rights, check out our resources aimed at advocates and older people. All BIHR’s resources are freely available here.

If, like us, you think human rights are worth protecting, find out how we can stand Together For Human Rights, check out our page: The Human Rights Act: Protect What Protects Us All


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No, not all men affected by prostate cancer are straight and no, my wife will not be picking me up after treatment

Jim Peters blogs at Rant from the Suburbs after reading this piece he had published with Macmillan in April we contacted Jim who kindly gave permission for us to reblog this post from his blog.

Jim Peters from Rant From the Suburbs

Jim Peters from Rant From the Suburbs

I just read an entry from Nick Wright on the Prostate Cancer UK blog entitled “Life after prostate cancer – it’s about more than surviving”, which, for me, was very inspiring. I liked the piece. I even clicked on “Like”. I’d recommend anybody interested in prostate cancer read it. But, there’s always a “but”.

I have often been inspired and encouraged by things I’ve read and heard over the last two years since first having the word “cancer” mentioned to me by my GP. On almost every occasion that inspiration has soon dissipated when the realisation dawns that, once again, what’s being spoken or written about is done without any thought that people like me might be affected by this disease.

The assumption always made is that a man with prostate cancer (a) must have a partner and (b) that partner must be a wife. Why?

Nick Wright’s piece was no exception. For example “The wives of the men on the programme played a key part in its success. And it soon became clear that they were having a tough time too”.

Nick, if you are reading this, my male partner of 30 years is having a hard time. He’s supported me all the way and is having to cope with the big changes in our life himself. He would also benefit from the great support you mention (and it is great support by the sounds of it). Language can be very inclusive and positive. It can also be very exclusive and negative.

As advised in the last paragraph of Nick’s blog entry, I did contact Prostate Cancer UK a few months back to see if there were any plans to start some sort of a support group in the London region for gay and bisexual men affected by prostate cancer. The reply amounted to “there’s no demand”. Apparently, there is demand in Birmingham where Prostate Cancer UK were recently looking for a support worker for a group it was setting up there.

I’m no expert on demographics, but I reckon it’d be a fair bet to say the London region has a larger population of gay and bisexual men than Birmingham and that it would follow that there’d be a larger number of us likely to be affected by prostate cancer in London than in Birmingham. Of course, it’s possible the person at PCUK who responded to my enquiry didn’t have a clue and genuinely thought London doesn’t have a large gay population. A bit like the old days when it was believed you’d only find a “homosexual” if there was a theatre in the town. For info, London has lots of theatres.

Luckily not everyone at PCUK is so totally unaware and unworldly. The organisation has recently published some excellent information for people like me – http://prostatecanceruk.org/information/living-with-prostate-cancer/gay-and-bisexual-men so there is hope.

It has also provided some help to at least one of the other two groups that have started in the UK in the last year, in addition to the one mentioned in Birmingham. A year ago there were no groups in this country for gay and bisexual men affected by prostate cancer, today there are three – the other two being in Manchester (Out With Prostate Cancer) and Greenwich in South-East London (Metro Walnut).

Our NHS still has a long way to go, too, when it comes to understanding that not all men with prostate cancer are straight. I’ve met some people in the NHS who have been instantly supportive when finding out I’m not straight. Unfortunately they’re still a minority. One Consultant genuinely wanted to know how prostate cancer was different (not worse) for a man who isn’t straight and was very interested when I explained. He is one of the people who is now attempting to start a support network in a region very near London for gay and bisexual men affected by all forms of cancer. At the other end of the spectrum I’ve had to repeatedly explain and repeat several times to the same people that “no, my wife will not be picking me up after treatment, my male partner will”. Assumptions being made are bad enough but when the same people insist on referring to my non existent wife it becomes very trying.

I didn’t used to bang the gay drum, well not as loudly anyway, but when you’re affected by something as major as cancer you tend to ask yourself why you’re still putting up with being ignored and excluded by organisations that are supposed to treat us all fairly and with dignity and respect. Having asked myself I decided I would no longer just put up with it. That’s one reason why I’ve written this.

Information on the three groups that currently exist in the UK for gay and bisexual men affected by prostate cancer can be found at the end of Prostate Cancer UK’s Prostate facts for gay and bisexual men.


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We mustn’t make assumptions

I had a great day with project colleagues recently at Age UK Camden exploring issues around Equality and the Older Lesbian, Gay, Bi-sexual and Trans-gender population.  It was good to re-address the issues raised in the Equalities Act but most important to have a reminder about not making assumptions about people. It is so easy to ask someone if their ‘wife is coming to visit’ or ‘will your children be popping in?’

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We looked at a timeline that told us that the first mention of  punishment of homosexuality was in 1290 and that in  the early 19th century 1 in every 8 executions was for sodomy or ‘unnatural misdemeanour’s’ Then in 1988 Section 28 was introduced which stated that a local authority shall not promote the teaching in any maintained school of the acceptability of homosexuality as a pretended family relationship” . It was not until 1992 that the World Health Organisation removed homosexuality from the list of mental illnesses.

When you think that a lot of the people we are supporting on the Cancer, Older People and Advocacy Project grew up in this environment, it reminds us how important it is to be sensitive to their wishes and to make sure that people are given the chance to talk about their identity and sexuality if they choose to.

Naomi

Naomi

At the end of the morning session we watched a lovely video showing the personal stories of several people who have used the services of Opening Doors London (ODL) who provide information and support services with and for older Lesbian, Gay, Bisexual and Transgender (OLGBT) people in the UK. Have a look on http://openingdoorslondon.org.uk/ – it says it all.

Naomi Karslake, Volunteer Coordinator, Oxfordshire Advocacy