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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Advocates relish in the words “not possible”

Lizzie Sturm gives us the low down on what’s been happening recently at project partner Advocacy in Barnet:

We seem to be spending so much time recruiting! The last two months have seen us interview for a Volunteer and Training Co-ordinator, a Project Manager as well as Volunteers for the Barnet Macmillan Advocacy Project. I hope that people will get to meet Tasneem Goheer, the new Volunteer and Training Co-ordinator who started at the beginning of January over the next few months. The calibre, passion and dedication of volunteers that join us never fails to humble me.

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As a Macmillan partner, we positively benefit from both the learning of COPA projects sharing their experiences at Board meetings as well as directly receiving the support and training of Macmillan. We had our “induction” last week with the Macmillan Involvement Coordinator Raj Bhattacharjee, informing us of what we can access as well as their expectations.  All staff on the Barnet Macmillan Advocacy Project will be attending their formal new professionals’ induction day in due course. We’ve also been introduced through OPAAL to our mentor organisation Dorset Advocacy, a really brilliant idea.

Despite the changes, Barnet Macmillan Advocacy Project is making a difference and the relief that advocates can offer is palpable. However, so many of the issues that we have dealt with can end up being a race against time. Betty Zulu is the Barnet Macmillan Senior Advocate currently supporting Mr P, who has terminal cancer (final stages) with housing issues. His wish is to transfer the tenancy in his name over to his children as he is very worried about leaving them homeless. The housing department are of course adamant that it is not possible to transfer tenancy to children. Advocates relish in the words “not possible” and Betty has been combing through tenancy and transfer laws to challenge this. Mr P has already noted the difference at the housing department since informing them he has an advocate. Betty has now identified that transfer to children living at home can be allowed so a positive resolution and peace of mind to Mr P is on the horizon. We hope that this will be completed within his lifetime. Betty says “I found it very important to provide support to Mr P as his health is quickly deteriorating. He was becoming very breathless even as we spoke. His prognosis is not very good. I feel very gratified that I am able to provide support for Mr P as he informed me that he had been to so many other organisations but unable to get any help”.

Lizzie Sturm, Advocacy in Barnet


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Care Act advocacy referrals ‘way below’ expected level

Advocacy experts fear people are being left without support to challenge council decisions about their care. Too few people are getting independent advocacy they are legally entitled to under the Care Act 2014, experts warn.

Four months after a local authority’s failure to arrange an advocate for a woman led to the first successful legal challenge under the Care Act, council reports reveal a dearth of referrals for independent advocacy. One local authority averaged less than two a month. A second saw just 9% of predicted demand.

Advocacy trainers and providers fear vulnerable adults are being left without support to challenge council decisions about their care.

Councils say they are investigating low referral numbers and working to raise awareness of advocacy support.

The advocacy duty

Under the Care Act, councils are legally required to offer an advocate to anyone who has ‘substantial difficulty’ being involved in assessments, care planning, reviews and safeguarding cases and lacks a suitable friend or relative to represent them.

The advocacy rights came into force in April. The government says more than 32,000 people should benefit this year. But the latest set of Care Act updates filed by councils, and feedback from providers, suggest many are missing out.

Referrals ‘way below’ expectations

A report published this month shows Reading council planned to spend £130,000 for more than 4,000 hours of Care Act advocacy this year. Six months in, just £5,000 has been spent on 170 hours of support. Only 26 people have accessed the service – less than 3% of all assessed for care and support needs.

“Demand is well below what we would expect,” the report says.

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The council is running events to raise awareness of the new advocacy entitlement and said “ongoing monitoring” of referral rates was needed.

A report for Nottinghamshire council shows just six people were referred for independent advocacy in the first three months after the act came into force. The council is investigating whether people are being referred appropriately.

One advocate working in the south of England, who asked not to be named, told Community Care his service received fewer than 10 referrals despite expecting hundreds.

Kate Mercer, a leading advocacy trainer, said she knew providers with similarly low referral numbers: “It’s patchy but overall there’s real concern in the sector that councils are either deliberately not promoting advocacy at a time of cutbacks or, a less cynical view, that they simply don’t have the resources to train staff to know when to refer.

The risk is people won’t know what they’re entitled to, councils will do the bare minimum and – with no advocate involved – no-one pushes anything forward.”

Commissioning issues

Advocacy providers warn short-term commissioning is contributing to the problem.

Almost two-thirds (63%) of Care Act advocacy contracts are for less than a year, according to evidence submitted by the Care and Support Alliance to a Public Accounts Committee inquiry last month. One in four deals is a ‘spot purchase’ contract, where councils only pay a fee per referral.

Advocacy is meant to receive £45m funding through the Better Care Fund, a pooled budget between councils and NHS providers. However, a survey of advocacy providers included in the evidence to MPs suggests services expect to receive less than half of the promised funding.

Phillippa Ashcroft, head of policy at VoiceAbility, said the situation made it harder for providers to plan and build awareness of services.

She said: “If you look at the type of commissioning, particularly spot purchasing, it points to more of a gatekeeping mentality. It makes it difficult for providers to train staff and really build momentum locally.

“When Independent Mental Capacity Advocacy was brought in a few years ago, there was significant funding in the start-up phase and there was a network of mental capacity leads championing it. It had a whole raft of support. Care Act advocacy doesn’t have anything like that.”

Ashcroft said some councils had implemented the advocacy duty well, but described the national picture as “poor overall”. Part of the problem is delays in people getting social care assessments, she added.

“This is what we hear from people ringing into our helpline. The advocacy duty actually applies from the point of first contact, request or referral, including self-referral, for an assessment. Advocates support people to prepare for their assessment and without access to advocacy, for both assessments and for information and advice, people have found that they are being sent round the houses instead.”

The Advocacy Action Alliance’s recent monitoring report found: 63% of contracts for independent advocacy were for 12 months or less. Some local authorities that had not commissioned any Care Act advocacy in time for April 2015 required “nudging” by advocacy providers to set up a commissioning process.
In the majority of reported cases (17 local authorities out of 21) the spend on independent advocacy was less than 60% of what the Local Government Association’s Care Act ‘Ready Reckoner’ had indicated it should be for 2015-16, and the average was less than 50%.
15 out of 29 responses reported that their contracts and contracts held by other organisations to provide advocacy had been reduced or ended since April 2015, suggesting a reduction in the provision of advocacy in many local authority areas.

Kath Parson, Chief Executive, OPAAL


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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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Ensuring accountability when older people can’t speak up for themselves

Wendy, a former magistrate, is 81 years old. She has lived in her home for 32 years. Wendy has recently developed severe dementia. Her son John cares for her at home, with the help of the local authority. When social workers ask Wendy about some scratches and bruises she can’t remember how they happened. The social workers decide to visit Wendy when John was out shopping and take Wendy away to a nursing home. They had no authorisation to do this.

When he returned home, John could not find his mum and no one told him where she was. It took John 19 days to find Wendy, and only after he had asked a lawyer to write to the council to try and locate her. John wanted to visit his mother, but because of the unexplained injuries, the council restricted John and Wendy’s contact, despite not investigating how the injuries had occurred. John and Wendy were not allowed to meet unsupervised for more than a year.

After sixteen months, the council dropped its (uninvestigated) allegations of abuse against John. The family decided to take court action because they believed keeping Wendy in the care home was a breach of her right to liberty, which is protected by the Human Rights Act (Article 5).

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The judge found the way the council had handled their concerns about Wendy’s welfare was ‘woefully inadequate’. They had not investigated whether she was at risk before they took her away from her home, and they had not got the correct authorisation to keep her in a care home. Therefore, the local authority had breached Wendy’s right to liberty. In addition, the judge said the council had breached her right to respect for her private life in her own home, protected by the HRA in Article 8. This right also protects Wendy’s right to a family life with her son, John, which was breached when their visits were restricted. Wendy and John are now free to visit whenever they want.

To learn more of the work of the British Institute of Human Rights please visit their web site here https://www.bihr.org.uk/


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Helping an older couple live in the same care home

Dora and Simon had been married for 59 years. Dora was blind and had recently developed Alzheimer’s. She and Simon were injured in a fall at home, and Simon was no longer able to care for her while he recovered. During this time, Dora was moved into a local publically funded nursing home.

It became clear that Dora would have to stay in a nursing home, but Simon visited her every day. However, their relationship was threatened when the local authority decided to move Dora into a permanent nursing home that was too far away for Simon and their children to visit.

 

Simon contacted Counsel and Care. They helped Simon to challenge the decision to move Dora on the basis that his and Dora’s right to family life under Article 8 of the Human Rights Act was threatened by the move and the local authority needed to consider this right when making their decision. This helped Simon to persuade social services to allow Dora to remain in the nursing home close to her family and to Simon.

Source: BIHR & EDF ‘Human Rights and Equality in the Voluntary Sector’ (2010)