Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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We’re marking World Cancer Day

Since today, 4th February, is World Cancer Day, we wanted to mark it by sharing a story from our recent publication: Facing Cancer Together – demonstrating the power of independent advocacy.

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Charlie’s story (as told by Karen his advocate with input from Pat, his wife)

Charlie was referred to the advocacy service by the Macmillan Benefits Advisor. He’d been a hospital inpatient for 9 months as he was still being fed through a PEG (a line straight into his stomach) after radiotherapy to treat throat cancer. He hadn’t been able to return home as an appropriate Care Package had failed to be put in place. Although he was free to leave during the day, he had to spend the night on the ward while the liquid feed was slowly fed into his stomach.

Charlie believed that the radiotherapy had ‘burned a hole in his throat’ and he had wanted to pursue a complaint about this but in fact this turned out not to be the case. Working with Karen his advocate he was able to understand better what was happening and why he was experiencing the symptoms he had. Charlie was also understandably really fed up at being stuck in hospital and wanted to get back to living as independent a life as possible.

Charlie and Pat

Charlie and Pat

Charlie had a long history of alcohol abuse although he had long periods of sobriety. Throughout his adult life, during his more functional periods he had sustained a relationship with Pat and after his diagnosis she was there to support him. Unfortunately, prior to his diagnosis Charlie had been drinking heavily and found himself in a vulnerable situation where his flat was frequented by (often unwelcome) visitors and neither the location nor the condition of the flat meant it was a suitable place to be discharged to and for nursing staff to attend.

Due to his alcohol use, Charlie’s memory was very poor and when he was drinking he had been exploited financially by some individuals in his life. As a result a Power of Attorney was lodged with the local authority and his finances were controlled by a Deputy there.

Pat was keen to support Charlie and Karen his advocate quickly got to know them both. Together they were struggling to get things in place to facilitate Charlie’s discharge. Pat’s flat was too small to accommodate the medical equipment and visiting medical staff that this would entail and she understandably felt unable to take on the medical aspects of his care.

Pat describes Charlie at the point when he was first introduced to Karen, “He got very depressed. They kept saying they’d release him from the hospital, but it didn’t happen. They couldn’t sort out his care at home, so they couldn’t work out how to discharge him. He couldn’t eat, but he could drink alright. He told me he’d had enough.”

Charlie’s future was far from certain when Karen first met him, he’d had radiotherapy to treat his throat cancer but there was no definitive prognosis. Karen attended appointments with him and his partner (and latterly wife) Pat.

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Karen supported Charlie at appointments, reminding him, ensuring hospital transport was in place and liaising as requested with health care professionals to ensure that he understood what was happening. She ensured he was supported to return to being able to eat some foods as soon as possible rather than taking all his nutrition via the PEG.

 

Once Charlie’s diagnosis became terminal, the focus of the advocacy centred on supporting him to stay in control of his life right to the end. Charlie desperately wanted to leave hospital and Pat and Charlie wanted to finally get married. The advocate was able to represent Charlie to both the Deputy administrating the Power of Attorney and his Social Worker to facilitate not only these wishes but also his wish to die at home.

Karen helped Charlie and Pat get appropriately graded on the housing list and successfully bid on a two bedroomed bungalow. When relations broke down with the Social Worker Karen negotiated on Charlie’s behalf so that he no longer had to deal with the individual who had made him feel very judged and misunderstood. When relations also broke down with the appointed Deputy all negotiations were carried out by Karen which alleviated some of the stress for Pat and Charlie.

Karen’s challenge to the attitudes Charlie encountered from some health and social care professionals meant that his wishes were respected and that, in spite of them not necessarily understanding his decisions, they were respected.

Karen and Pat

Karen and Pat

Charlie’s cancer returned shortly after he had begun to slowly eat solid food again and he was faced with a terminal diagnosis. Sadly, he passed away in December 2015.

Charlie’s wife Pat says, “Our advocate, Karen, helped with such a lot. She used to speak up to the County Council for me, because I didn’t want to get into another argument. She helped Charlie to get to his hospital appointments on time. She’d meet him in Poole to make sure he arrived. I’d have been lost if it wasn’t for Karen.”

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You can read more stories about the power of independent advocacy support for older people affected by cancer in Facing Cancer Together which can be accessed and downloaded here

 

 

 

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Watch our for our forthcoming publication of volunteer stories. It’s called Time: Our Gift To You. It’ll be available to read and download very soon.

 

 

 

 

Marie McWilliams, OPAAL

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Poor old Guy and his fellow conspirators would have had no need to resort to gunpowder had they had the right to free speech, freedom of thought, religion and belief, and the prohibition of torture and inhuman treatment.

Ahead of November 5th, we have a really thought provoking post from Rhonda Oliver of Barnet Macmillan Cancer Advocacy Service (Advocacy in Barnet). We hope you enjoy it as much as we did:

 

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Remember, remember, the fifth of November

Gunpowder treason and plot

We see no reason why gunpowder treason should ever be forgot!

The fireworks are already starting near me as a prelude to the gruesome Guy Fawkes’ Day commemoration (or it could be the happier celebration of Diwali) and I tried to remember what I knew about the Gunpowder Plot. Guy Fawkes and several other conspirators plotted to blow up the Houses of Parliament to protest against the poor treatment and oppression of Catholics under the reign of King James I (James VI of Scotland) 1566-1625.

This made me think of the Human Rights Act – like you would – and its protections. Poor old Guy and his fellow conspirators  would have had no need to resort to gunpowder had they had the right to free speech, freedom of thought, religion and belief, and the prohibition of torture and inhuman treatment.

Rhonda Oliver

Rhonda Oliver

 

My grasshopper brain then leapt to the Brexiteers’ proposed “British Bill of Rights and Responsibilities” and I wondered how this might impact on advocacy – if at all?

We have had cause to consider invoking the Act in a case where someone was being pressured into leaving their home by the local authority under the “Respect for privacy and family life” provisions. In the end, sanity prevailed and the person was supported by their advocate to stay at home. I wonder whether any other Advocacy groups have had cause to use the Act to ensure that public organisations (including Government, the Police and local councils) treat everyone equally with fairness, dignity and respect? It would be great to hear about them.

We must hope that any new bill would not weaken everyone’s rights by leaving politicians of whatever stripe to decide when fundamental freedoms should apply.

 

So, holler boys, holler boys, Let the bells ring.

Holler boys, holler boys, God save the king.

 

And what shall we do with him?

Burn him!

Have you had cause to use The Human Rights Act in your advocacy practice? If so, do let us know and join the conversation.

Rhonda Oliver, Barnet Macmillan Cancer Advocacy Service 


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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.

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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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December 10th is Human Rights Day

OPAAL has signed up to a Human Rights Day letter from civil society groups. Providing an opportunity for groups to join together and speak up for the importance of human rights laws for us all, this sits well with OPAAL’s commitment to advocacy and thereby to empowerment and to ensuring that the voices of older people are heard.

The letter states:

Sixty-five years since the adoption of the Universal Declaration of Human Right (UDHR), we ask political leaders to acknowledge the continued relevance of human rights both on the global stage and here at home. As leaders of civil society groups we see the vital role of human rights in ensuring a fair and healthy democracy, and helping us all to live with dignity and respect. Yet we are concerned that the value of human rights, which so many across the world look to for inspiration in setting down domestic laws, rarely feature in the current Westminster rhetoric.
 
This Human Rights Day, we ask political leaders to ensure that recent commitments at the United Nations Council to ‘work tirelessly for the promotion and protection of human rights, both domestically and abroad’ are made a reality. We hope that the UK will stand firm on the European Convention on Human Rights and our Human Rights Act, both inspired by the UDHR and providing vital protections to us all here at home. There is much to do to ensure these human rights have meaning for all people in the UK; our political debates should focus on making this happen rather than taking us away from the universal human rights standards long-championed by the UK.
We hope that those in positions of responsibility are able to support human rights for everyone. It’s time for the recent lambasting of the Human Rights Act here in the UK to end and a more considered approach to be taken.


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60 years of Human Rights protection

3 September 2013 marks the 60th anniversary of the European Convention on Human Rights (ECHR) coming into force.

60 years of Human Rights

60 years of Human Rights

During the Second World War countries across Europe witnessed what can happen when there are no rules on the exercise of government power. In the aftermath of this conflict governments, including the UK, drafted the ECHR and agreed they have legal obligations to respect, protect and fulfil a set of basic human rights belonging to all people in Europe.

The ECHR aims to ensure coherent and consistent protection of the human rights of the 800 million people in the 47 countries of the Council of Europe, including the UK.

Here in the UK Human Rights legislation has been getting a bad name recently, used as a scapegoat for court decisions seen by some as questionable. BUT, more and more independent advocates are making use of Human Rights legislation to protect the rights of vulnerable older people.

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Click the link to find the factsheet about the European Convention on Human Rights from the British Institute of Human Rights and read their human rights guide for older people here