Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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The Relate Macmillan Counselling Service is now available in the West Midlands

Macmillan Cancer Support has formed a partnership with Relate West Midlands to offer free relationship counselling to anyone affected by cancer. It’s a regional project for the West Midlands and is open to residents of Birmingham, Solihull, Wolverhampton, Sandwell, Dudley, Walsall and South Staffordshire for 3 years (up to April 2019).  Here the coordinator tells us about the service:

I’m Eileen Clews and I’d like to introduce myself as the Coordinator of this new service. It’s a job I’m delighted to have because cancer can have a huge impact on families and friendships.

When we talk about relationships, it’s not just about your other half. It can also be about brothers, sisters, mums, dads, and carers. The people around us make a huge difference to how happy we are, and strong relationships can help us get through life’s tough challenges, like cancer. 

Eileen Clews

Eileen Clews

Some of the people who come to see us are single and don’t have a lot of family, we work with them on strengthening the support they do have around them.  Others are partners or relatives who find an hour a week to talk to a counsellor about their concerns very helpful. The majority of those we see are patients or ex-patients as we are there to help whether the diagnosis was recent or some years ago.

When you come to see a counsellor the first appointment is always a consultation. This is to find out a bit about the issues and ensure we are the right people to be seeing you at this time.  After this there are 7 further sessions available.

At the moment we are offering appointments at Birmingham, Wolverhampton and Solihull Relate offices but if we get enough demand there is the possibility of using our sites in Dudley and Oldbury.  Unfortunately, we can’t come and see people in their own home but we can offer Telephone Counselling if people can’t get to us.

While many of the referrals to the Relate Macmillan Counselling Service have come through the NHS, you can also refer yourself.  To do that or simply find out more about what we offer contact me on 0121 643 1638 or by email macmillan@relatebirmingham.co.uk

Very soon after I was in post, Sandwell Cancer Older People and Advocacy (SCOPA) came forward to tell me about what they do and recruit me onto their Steering Group! I am very happy to be part of this and am impressed with the work they are doing in Sandwell.  This is an area I have worked in before when I ran a project for The People’s Orchestra in West Brom (not a musical one, that would not have gone well). While the geographical area for this new counselling service covers most of the West Midlands, I am hoping that we will get some referrals from Sandwell and surrounding areas.

If you know of anyone who might benefit from some relationship counselling, who has been affected by cancer, please do tell them about the Relate Macmillan Counselling Service.

There are further details on our website

http://relatebirmingham.co.uk/our-services/the-relate-macmillan-counselling-service/


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Facing Cancer Together: we’re demonstrating the power of independent advocacy

We’re really excited today to announce the publication, in partnership with Macmillan Cancer Support, of our latest collection of older people’s cancer advocacy stories entitled Facing Cancer Together.

In 2014 we published Every Step of the Way, a set of patient stories which illustrated the need – and value – of peer advocacy services for older people living with cancer. In this, our second publication, we bring together a further twelve stories of overcoming struggle, loss and anxiety, illustrating a new reality of what older people living with cancer can and should experience.

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But these stories also speak to a broader societal truth, and contradict the common narrative that the pressure from an ageing population with increasingly complex needs is overwhelming our health and social care system. At the heart of that narrative is a prejudice that older people are somehow too needy, too frail, too dependent and a burden the rest of society is expected to carry. This kind of prejudice robs older people of voice, choice and control. Advocacy – such as in the stories contained in Facing Cancer Together – seeks to return them.

When we read stories like these, we aren’t just reading about the experiences of one older person with cancer; we’re also being gifted rich insight on the big challenges facing policymakers, commissioners and practitioners, such as how to deliver high quality, compassionate, person centred care that enables people to be equal partners in their care; and how to tackle marginalisation, social exclusion and uncertainty; and how to manage the impact of cancer
on family, or emotional health, or housing.

Those challenges are for us all, regardless of age, and the methods of addressing these challenges, by investing in peer advocacy and support, greater community engagement and creating the motivations of staff to involve patients in their own care have a net benefit for all of society.

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Stories are powerful not least because they have the capacity to tell us something about ourselves.
The twelve stories in Facing Cancer Together represent the wide range of experience that our advocacy programme
has encountered across 1500 plus cases over the past five years.

 

We hope that they most of all resonate as examples of the actual support available to provide reassurance, companionship, dignity and, most importantly of voice, choice and control.

We want to thank all of those who were willing to share their stories with us, and the many advocates involved in
the programme.

Jagtar Dhanda, Head of Inclusion Macmillan Cancer Support & Kath Parson Chief Executive OPAAL


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Have you voted in the blog awards yet?

OPAAL has been nominated for a UK Blog Award (best health blog) and we’d really appreciate your vote to help us show that #advocacyworks!

We use the blog as a space where we can amplify the voices of older people affected by cancer, giving them a platform to tell their stories. We have made a decision to be brave about the stories we tell, touching on issues including end of life, bereavement and the realities of living with a cancer diagnosis, either as a patient, a carer or both.

The next stage of the process is the Public Vote, which began on Monday 5th December and runs until Monday 19th December at 10.00am. The UK Blog Awards committee tell us that the calibre and standard of candidates who have entered and been nominated has raised the bar for another year and they cannot wait to award the UK’s content heroes and heroines of 2017!
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The awards are now in their fourth year and have seen a substantial increase in quality of entrants. The UK Blog Awards are the biggest and UK’s longest running programme to recognise influencer talent. 

The Public Vote is an important aspect of the process, as it allows our community to have their say and to show their support for our content. The voting process is quick, simple and effective.

All votes are cast directly from the OPAAL profile page on the UK Blog Awards website. Our page has a unique URL link and can be accessed by clicking here
Marie McWilliams, OPAAL


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One Man’s Experience Touching the Nation

Today Jen Rimmer from Dorset Macmillan Advocacy (Dorset Advocacy) tells us about the inspirational Steve Hewlett:

Steve Hewlett’s recent interviews on Radio 4’s PM programme about his experience of cancer have been widely acclaimed. Steve is a writer, broadcaster and media consultant – he is also the editor of Radio 4’s Media Show and was diagnosed with oesophageal cancer in March 2016.

From the outset Steve understood that his treatment was always going to be about extending lifespan rather than curative and Steve has been open and frank about his feelings and experiences both with his family, colleagues and the nation!

As a seasoned journalist, maybe it comes as second nature to him to research and report on his cancer experience but the resultant articles and particularly the interviews with PM’s Eddie Mair have provoked a strong response in those that have heard them with listeners reporting things like remaining sitting in their cars on their driveways to hear the interviews in their entirety. Others have commented on the positive effect of hearing a man (or men as Steve’s 3 grown sons are also interviewed on one occasion) discuss his feelings so openly.

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Steve in his cold cap during chemo

From the outset, Steve’s experience has been characterised by choices. Initially choosing the best hospital and treatment and, latterly investigating the possibility of participating in clinical trials.

Faced with a terminal diagnosis and potentially a short window of opportunity (he was told that, left untreated, he would lose the ability to eat or drink within 8-10 weeks) Steve describes himself as being “reduced to tears” but the inefficiencies of the NHS administrative process in securing appointments.

At his very first appointment at his local hospital, Steve describes being seen by a Registrar who suggested a treatment regime but made no mention of an additional drug that Steve had been expected to be offered based on his own research. So Steve politely mentioned it. Leaving the room, a brief corridor discussion between Registrar and Consultant led to the Registrar returning and offering to include the additional drug. On questioning the Registrar agreed that research does suggest that, although patients may tolerate the treatment regime less well, the additional drug provides a 10% improvement in response. Steve comments wryly that 10% seems a lot more significant when faced with a prognosis like his but his main point here is that he felt aggrieved not to have been offered the choice. Unsurprisingly this hospital was not in the end Steve’s choice for his treatment, opting instead to attend the Royal Marsden in London.

The Macmillan Cancer Nurse Specialist present during one interview underlined the importance of taking a second person with you to appointments not least for emotional support but also to be a second pair of ears. Steve agreed that this was great advice but wondered how his 80 year old mother would cope with this process if he found it so hard. “Would she have been able to access the information, would she have been able to get on and off the phone chasing her appointments and ultimately challenge the doctors? How many people just go along with it all passively?”

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Here we see an educated, articulated and self-advocating individual describe his experience of navigating the cancer pathway and struggling. As advocates we traditionally support those less able to have their voices heard but Steve’s testimony makes the case for cancer advocacy clear. Even when health care professionals are doing their very best, many of us would find advocacy support invaluable if faced with a difficult diagnosis.

Find Steve’s interviews here on the BBC’s iplayer: http://www.bbc.co.uk/programmes/p03m4q5s/episodes/downloads

Follow Steve on Twitter: @steve_hewlett

Jen Rimmer, Dorset Advocacy


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Our cancer journey

Today Bec Hoare from Cancer, Older People and Advocacy programme delivery partner Getting Heard (formerly Oxfordshire Advocacy) explains about an exciting new report by peer advocates called “Our Cancer Journey” and a film featuring Linda and Rosie:

Over the last year or so, a number of our Peer Advocates, who are also members of our Local Cancer Champions Board, have got together to share their experiences as patients receiving treatment within the Oxford University Hospitals Trust.

They have produced a report that encapsulates some of their feedback, comments and thoughts about their own experiences and those of their clients. This has led to a number of recommendations for changes to certain aspects of some hospital services, ranging from facilities and practical matters within hospital waiting rooms to issues around car-parking. They have also considered the important area of informed consent and the ways in which patients are given and receive information.

Getting Heard logo

The report has now been shared with senior staff within the Oxford Hospitals, and has been very positively received, with a real readiness to work together to address the recommendations. You can access the report by clicking here

To accompany the report there is a short film clip of one of the Peer Advocates who is also a Cancer Older People and Advocacy client, and a contributor to the report, discussing with her Advocate the very positive impact of advocacy in her own situation. You can watch the clip of “Linda and Rosie” by clicking on the film below:

 

We very much hope you find the report and film clip helpful and illuminating, as well as challenging.

Bec Hoare, Getting Heard


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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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..faced with a cancer diagnosis, feelings of isolation and confusion are only magnified..

Karen Renner, who has recently taken up post as Volunteer Coordinator at programme partner AgeUK Northumberland, gives us an insight into why delivering the Cancer, Older People and Advocacy programme is so important in Northumberland:

I started working as the Volunteer Coordinator on the Macmillan Cancer Advocacy Programme with Age UK Northumberland in September.

I have worked with volunteers in various roles in the past but I am new to advocacy.

I am passionate about the project.  As Macmillan say, ‘no one should face cancer alone’ but sadly, in the case of older people this can be all too true. Over one million older people haven’t spoken to a friend, neighbour or family member for over a month. This is sad enough but faced with a cancer diagnosis, feelings of isolation and confusion are only magnified. That’s where our project comes in and can assist in ensuring that voices are heard, informed decisions taken and quality of life maintained.

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Even those fortunate to have the support of loved ones can feel lonely.  It is not unusual for older people to keep their concerns to themselves: they don’t want to trouble anyone and they don’t ‘want to be a burden’.  An advocate can bridge this ‘gap’.

Working in Northumberland provides its own unique challenges and rewards.  The county has vast rural areas with pockets of small communities that don’t have the ready access that more urban counties have to services and professionals. Older people are typically traditional, proud individuals who like to go about their daily lives with the minimum of fuss. That’s why the project is so important.  One in three of us will be diagnosed with cancer at some stage of our lives and everyone should have support at that time.

Karen Renner

Karen Renner

I am fortunate to be working in a small team of dedicated, enthusiastic people who all feel the same way.  We are working towards the vision of OPAAL: that is, the provision of high quality independent advocacy. Our volunteers will be the key to achieving this.

Karen Renner, Age UK Northumberland/Macmillan Volunteer Coordinator