Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Northumberland’s good news on volunteer recruitment

Carolyn Reynolds tells us about successful volunteer recruitment in Northumberland:

When we at Age UK Northumberland were planning the launch of our Cancer, Older People and Advocacy project in partnership with Macmillan Cancer Support, we knew we’d be looking for some pretty special volunteers with the skills and experience to help us really deliver.

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We thought carefully about our approach to recruitment for the three very different areas of the very large and diverse area we have to cover.  We’re starting in the North of the county where there’s lots of gorgeous rurality and coastline (and plenty of sheep), but not much in the way of transport links – support services are pretty thinly spread.

Fortunately our local press is very well regarded and popular so it made sense to hatch a plan with one local journalist to interest him in the project. It wasn’t difficult. This is a human interest story touching the lives of a great many local readers, so he was keen to help.

So we put together a feature which brought together the local people who were running the project, some great photographs, a case study which explained exactly why the service is so important, and a story from our Project Manager explaining exactly the sort of people and experiences that would make for a brilliant volunteer team. I made it as easy as possible for the journalist to put together a decent feature without having to do too much extra work or research.

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To our huge delight, we were given a whole page to feature the story in two titles, the Northumberland Gazette and Berwick Advertiser. Both Alnwick and Berwick are community focussed market towns, home to lots of early retired people.  However, competition for good volunteers can be particularly fierce. We didn’t want to poach from other organisations, but we knew there would be other good people out there.

Now for the good news – our plan worked! We were delighted to see a full page of coverage in our target geographical area, and a week later 12 volunteers had come forward. They’re a really diverse bunch but happily each and every one is exactly the sort of volunteer we had hoped to attract. People who’ve had personal experience of cancer and of caring for people with cancer. People who’ve recovered from cancer and who want to give something back. People who really understand some of the difficulties people coping with a cancer diagnosis face.

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Of course, one size won’t fit all when it comes to volunteer recruitment in other areas of Northumberland. I’ve got alternative plans to attract volunteers in the very different demographic of the urban south of the county which is one of the UK’s most deprived ex-industrial areas and in the rural west – farming communities and commuter belt villages.

But for now, we have friendly journalists on board who are delighted to continue to report on our progress in at least one of our target areas. Result!

Carolyn Reynolds, Volunteer Co-ordinator, Age UK/Macmillan Cancer, Older People and Advocacy Project


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Strange how much irony there is in life!

Lizzie Sturm, Director of Advocacy in Barnet, tells us about her new, personal perspective, of the Cancer, Older People and Advocacy Programme.

Advocacy in Barnet (AIB) are really excited to be the newest OPAAL hub member to become a Macmillan partner. Three weeks ago we held interviews to recruit a volunteer coordinator for the Barnet Macmillan Advocacy Project. The Macmillan Involvement Coordinator (North and East London), experienced volunteer and myself comprised the panel, meeting a range of candidates and spending much of the day talking about cancer pathways. I hope that people will get to meet Alex Pinnick, the new Volunteer Coordinator who starts on 16 September over the next few months.

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Strange how much irony there is in life! Within a few hours our conversations about cancer pathways became personally meaningful.  My Mother (in her late 80’s) was diagnosed with lung cancer that evening. We’re now embarking on our own cancer journey with each participant experiencing their own unique impact and place in this.

It’s been a long three weeks with a myriad of emotions experienced and a lot of learning already. At every step of the way, my belief in the value of advocacy support to older people affected by cancer has been absolutely affirmed.

My parents are intelligent, articulate and independent people but they are immensely affected by this scary diagnosis and prognosis as are all the family. The medical team and nursing care have been superb but there are so many, many significant details and ramifications that need to be attended to. I am fortunate to be in a position where I can try to support them. Even as someone “fairly in the know”, there will definitely be times where I will flounder in this.

I can certainly bring in an unexpected and new perspective to the training of our Barnet Macmillan Advocacy Project. As I am sure other projects have encountered, the spectrum of issues that may require advocacy for an older person affected by cancer is enormous and I am delighted that our new Barnet Macmillan Advocacy Project will be able to make a difference.

 

Lizzie Sturm, Advocacy in Barnet


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Advocates in Integrated Care: making a difference..

Sam Bond, Service Manager at The Macmillan Impetus Cancer Advocacy Service in Brighton & Hove, explains why advocacy can make a real difference

“The use of health and social care by people with cancer” a 2014 study commissioned by The Department of Health, shows a clear link between cancer diagnosis and use of social care.  The report explains “For some social care is critical to their independence and ability to participate in society.”  However, use of social care by people with cancer is not equivalent to use of social care by people with other chronic conditions. A report by Macmillan in 2010 ‘Cancer should be as much a social concern as it is a health priority’, found that statutory social care was not meeting the needs of people with cancer. ‘People were often not referred for an assessment and did not know about the types of services which may be available. The research also found that those who commissioned social care services had limited understanding of the specific needs of people affected by cancer.

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However, recent updates to legislation aim to transform the delivery of health and social care. The Care Act now places a duty on local authorities to work more closely with health services in order to promote the wellbeing of adults and improve the quality of care they receive. The Care Act espouses core values of ‘wellbeing’ alongside ‘whole person’ care, promoting independence. It extends the right for eligible people to access independent advocacy so that they can be involved in social care assessment and safeguarding processes. But what about advocacy support for people to be involved in integrated health and social care processes? What will ‘whole person’ care look like for people affected by cancer? My understanding is that it must be based on the needs of the individual and their particular circumstances.

Cancer advocacy services, born of a collaboration between Macmillan Cancer Support and The Older People’s Advocacy Alliance, are responsive to people affected by cancer and their individual circumstances. The trained advocates, professional advocates and peer advocates with their own experiences of cancer, have time to build a relationship of trust with the client, listening and finding out what’s important to that individual (‘the whole person’).

When I started my role as Service Manager at The Macmillan Impetus Cancer Advocacy Service in Brighton & Hove, I had some concerns that health and social care professionals might view advocates warily. However, my experience so far, is that health and social care professionals welcome the opportunity to have the involvement of an advocate to support their clients.

Sam Bond

Sam Bond

I found a recent conversation with a health professional quite revealing on this matter. He told me that the hospital where he worked had had an experience where some paid carers accompanying clients to appointments sometimes behaved in an adversarial and accusing manner towards health professionals. He said he had found that particular carers sometimes had their own agendas when they accompanied patients to appointments. This caused the health workers felt defensive and sadly the patient’s wishes were getting lost in the middle of all of this.

Having worked as a paid carer myself for a number of years, it is not my view that paid carers generally act in an accusing way. However, this example does emphasise the value of properly trained advocates.  An advocate’s only concern is to represent the wishes of the person instructing them. Advocacy is certainly NOT about accompanying a client to an appointment equipped with a detective’s notebook and a suspicious frown! Of course advocates can and must raise concerns regarding the quality of care if clients wish them to. But this is just a fraction of what advocates do.

An advocate can extend the support that health and social care professionals are able to offer. For example, Cancer Advocates can provide support by helping people to prepare questions for appointments in order that the person can make the best use of time with a clinician, as well as attending alongside the person. Advocates can ensure the person understands, gathering information and explaining information that might not be clear or requesting clarification. They can write information down for the person, and/or talk through the information again later on. Advocates do not give advice but help ensure clients can access information and consider its implications in relation to their particular circumstances, so that they are able to make informed choices. The benefit of Advocacy is that the advocate is instructed by the person.  This puts the person in control at a time when they may feel that they don’t have much control over the cancer, the treatment, the side effects, or their life.

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Clients often say they are concerned about who will be their point of contact. There may be a number of different health and social care workers involved, which can be confusing for people. For a person affected by cancer an advocate can be a consistent person alongside them helping to access services, and navigate the health and social care system. An advocate can be an asset in assisting good communication between client and health and social care providers and between the professionals and client. An advocate can ensure the person’s views are represented, helping the client to get the most out of health and social care and promoting the client’s independence. Cancer advocates are great examples of the way in which advocacy support complements the work of both health and social care professionals.

Sam Bond 

Phone: 01273 737888, Email: Cancer Advocacy@bh-impetus.org

 


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We’re delighted to introduce Advocacy in Barnet

Advocacy in Barnet (AIB) has been delivering advocacy for the past 17 years in the London Borough of Barnet. AIB is an independent advocacy service supporting people age 50 and over through free, impartial and accessible advocacy.

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AIB offers a range of advocacy services: Future Care Project raises awareness on the importance of future care planning and encourages people to complete advance care directives; Financial advocacy that offers support with financial matters and especially with financial abuse; Care homes advocacy where volunteer advocates visit elderly residents on a weekly basis and supports them with advocacy and care issues, AIB has received nationwide recognition by the NHS confederation and last but not the least, Ward embedded hospital advocacy that offers weekly visits by volunteer advocates on wards at Edgware Community and Finchley Memorial hospital, this service is unique nationally. In the last year, AIB supported over 6,000 residents across its various services. On an average AIB advocates (paid and unpaid) supports 120 older people per week.

AIB is a volunteer led organisation that has volunteers involved at various levels of the organisation’s operations including administration, recruitment, training, induction, promotion and publicity, press support, fundraising, media liaison, monitoring and evaluation and delivering advocacy.

AIB is thrilled to be getting the new Macmillan Cancer Support funded Barnet Macmillan Cancer Advocacy (BMCA) service off the ground. Betty Zulu our Senior Advocate will be supporting volunteer advocates with BMCA case referrals. We are in middle of recruiting Macmillan Volunteer Coordinator and new Volunteer Advocates. BMCA had its first LCCB meeting; with such passionate, resourceful and supportive LCCB members the meeting was very interesting and productive.

Janet Maddison and Jacqueline Wijewickreme

Janet Maddison and Jacqueline Wijewickreme

Reginald Glick and Asmina Remtulla

Reginald Glick and Asmina Remtulla

 

We have two active Macmillan Volunteer Cancer Advocates and one of them has been working with a cancer patient (who also has agoraphobia and anxiety issues) helping him with issues around housing repairs and housing benefit. The advocate supported this gentleman to get his flat repaired so that it is a safe place for him to live; he had tried for a year and half to access repairs and maintenance service at Barnet Homes but was not offered any help.

 

 

 

Whilst the advocate was supporting him with housing repairs, he informed the advocate that his housing benefit was cancelled but did not know why and wanted help with liaising with the housing benefit team. Our advocate liaised with the housing benefit team via emails, letters and phone calls and eventually, it was established that it was an error on their side and they resumed his housing benefit payments.

Renie Bowen and Betty Zulu

Renie Bowen and Betty Zulu

 

 

Betty with the help of the volunteer coordinator and volunteers’ team will soon plan outreach activities in the borough. Meanwhile, we are planning to organise our first ‘World’s Biggest Coffee Morning’ on 8th or 9th October 2015 with an aim to promote our service, gain referrals and for volunteer recruitment.

 

 

For more information please contact Heena Cornwell or Betty Zulu on 020 8201 3415 / 020 8201 3148. You can email us on bmca@advocacyinbarnet.org.uk .


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The Garden Party

Earlier this year OPAAL received an invitation from Patron, Her Grace The Duchess of Northumberland, to send a representative to attend a Summer Garden Party in the Alnwick Garden. Her Grace held the Garden Party in her capacity as Lord Lieutenant of Northumberland.

Since AgeUK Northumberland is one of our newest delivery partners in the Cancer, Older People and Advocacy programme, we passed the invitation along.  The following is their account of the day:

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Angela McKillop, one of our advocates for older people in Northumberland, was among 250 volunteers who recently attended the  Duchess of Northumberland’s  prestigious annual summer garden party.

Angela was lucky enough to be drawn to represent the volunteers who give their time freely to support the advocacy service at Age UK Northumberland. Angela had a wonderful day despite the rather chilly weather.

Angela McKillop

Angela McKillop

 

 ‘The Duchess a circulated among the guests, made a lovely speech and presented some awards towards the end of the afternoon.  I spent some time promoting the advocacy service to some WI ladies and carers from Cornhill, in the very north of the county, and made arrangements to go to their next meeting.  There were some lovely outfits and some delightful hats, but lots of us were grateful for our pashminas and jackets.”

The Grand Cascade at Alnwick Garden

The Grand Cascade at Alnwick Garden

 

 

 

 

The Duchess hosted the event at the Alnwick Garden, and was generous in her compliments to those who commit to a regular volunteering role: “There are so many extremely generous and extraordinary individuals in Northumberland who give up their time selflessly, to help others in need. This is our way of saying ‘thank you’ to them for the really valuable work they do.”

The Duchess of Northumberland

The Duchess of Northumberland

 

 

The Duchess as Patron of OPAAL previously said “I am absolutely delighted that the Cancer, Older People and Advocacy programme is coming to Northumberland. Older people affected by cancer can have such a rotten time so giving other older people with their own experience of cancer the opportunity to come forward to be trained as advocates to support them in their local community is wonderful.”

 

 

 

Carolyn Reynolds, Volunteer Coordinator, AgeUK Northumberland


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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)


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Pat Wallis – My Cancer Journey and How It Led Me to Volunteer For SPAC

I was diagnosed with breast cancer 9 years ago and underwent lumpectomy, chemotherapy and radiotherapy.

I cannot fault the treatment I received from Southport Hospital, in association with Clatterbridge. The breast cancer specialist nurses were wonderful and very supportive and informative. However the health professionals can only give you so much help, you need the support off others to help you cope.

Entering the world of cancer and going through the treatment pathway you experience a roller coaster ride of emotions. Initially there is the shock of diagnosis, with questions such as how advanced is it? Has it spread? These questions can take time to answer as there are tests to undergo. It is hard to explain to someone how stressful it is waiting for the results and to find out what treatment you will receive. You certainly need the help of someone to go through this with you. At appointments you may hear what is said but not take it in and thus having someone else there, when you see the cancer specialist, can make a significant difference. Once you know the treatment pathway you are going to receive there are many other concerns. If you are going to have chemotherapy you feel very apprehensive. Much of what you hear about chemotherapy tells you how awful it is. You wonder how ill will I feel, am I going to be very sick, will I be able to go out, what will it be like without my hair, will I suit my wig.

Hospitals can be very daunting places, even if you are confident and not afraid. I remember waiting in a cubicle with an unflattering gown on wondering if I had been forgotten. Once you are on treatment you may still have questions to ask the cancer specialist. It helped me to make a list and have someone accompany me to the specialist or my treatment.

Pat Wallis

Pat Wallis

If you are still working there could be financial concerns. You may be off work a long time and may need support in identifying your rights re sick pay and any benefit entitlement. I was fortunate in that the company I worked for paid me full pay throughout but this is not the case for everyone.

When you are on treatment you feel secure, as you are seeing health professionals regularly. However once you have finished treatment you can feel as though you are alone and have to start adapting to life again. However you still have the stress of check-ups and learning to live as a cancer survivor, which can be extremely frightening. Another hurdle you may have to overcome, if you are still working, is your phased back to work and you may need help to explain things to your employer.

My own experience of undergoing cancer treatment was very positive and as I have stated I cannot fault the treatment I received. I tolerated chemotherapy well and it was not an awful experience for me, I only missed going out for one day. When I lost my hair there were some benefits to wearing a wig, no bad hair days and I saved a fortune in shampoo. I was lucky that I had no financial problems. Throughout my treatment and after I was extremely lucky to have a supportive network of family and friends around me. However I recognised that there would be some people without family or friends to support them through the journey.

I decided to volunteer for the Cancer Older People and Advocacy project with Sefton Pensioners’ Advocacy Centre as I felt I could use my experience to support others. I recognised that my experience enabled me to support people, with cancer, from a standpoint of understanding the issues and concerns they were experiencing. I know that I could not have managed without the support of my family and friends and therefore understand how important it is to have someone else on your side. Having recognised the difference that support made to me I wanted to be that person for others. I enjoy what I do and the difference it makes. Given the choice to volunteer again I would still make the same decision and would encourage others to think about the positive impact they can have by offering their time to volunteer.

Pat Wallis
Peer Volunteer Advocate
Sefton Pensioners’ Advocacy Centre (SPAC)


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National Cancer Champions Board – working hard in London

On the 8th July I had the pleasure of chairing the National Cancer Champions Board meeting. This is an amazing meeting of people most of whom volunteer their time and expertise to come together to advise and help set future direction of our Flagship Cancer Older People’s Advocacy Programme. This was our twelfth meeting and to my shame I realise I have never thanked them publically for their work. Today I decided to put that right. We most often feature the stories our our volunteers or the people they so ably support, yet this group are very important to our work.

The Board is made up of people who either sit on our Delivery Partners Local Cancer Champions Board or have some knowledge, expertise and interest in supporting older people affected by cancer achieve better lives for themselves.

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Standing left to right.

Mig Muller (Macmillan) Sian Payne (LGBT Foundation) Sam Bond (IMPETUS) Carol Wood (ICANN)
Deborah Garrity (Age UK Northumberland)

Seated left to right

Sue Perry (Age UK Bristol) Antonio Quadrucci (OPABC) Anne Whitmarsh Neil Whitmarsh (SPAC)

Seated right to left

Ron Clayton (OPABC) Kath Parson (OPAAL CEO) Monica Dennis (Age Connects Cardiff) Andrew Jazeaeli (Macmillan)
Keith Beswick (Oxford Advocacy) Dawn Porter (KPAIS)

We discussed issues covering the success of the partners supporting those in need by celebrating a recent film we have made which features a wide range of stakeholders speaking about the benefits of our work to older people, our volunteers and health and social care professionals whose own work we seek to complement and support. Watch this space for the release of this film next month.

However much of the meeting wrestled with some of the challenges we face. These include bringing our work to the attention of the wider public, other health and care professionals and in particular commissioners, our need to recruit and train new volunteers and finally how to persuade our colleagues working in health settings to refer older people who need support to our service. This latter is a constant challenge, one which we are addressing with a wide range of strategies. Many of these strategies are fed into the board from our LCCB members who readily share the successes they have achieved for the benefit of all our partners. It’s a great example of people sharing their experiences, methods and activities which work. The meetings are hosted and serviced by Macmillan Cancer Support who also share their developments in working with the older people they support. Special to Anna Broomfield who takes the notes for our meetings and took the photograph above.

I always come away from these meetings reinvigorated, having learned something new and deeply grateful to be part of such a committed group of individuals. Thank you ALL for your time, patience and willingness to give so freely of your expertise and knowledge, without you our COPA programme would not be the success it is today.


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Getting justice for a war veteran unlawfully detained by the Council

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Peter is a 91-year-old veteran of the Second World War. Peter has health problems, including dementia, but he likes living in his own home. He sees friends and enjoys looking after his pet cat Fluffy.

Some of Peter’s friends became concerned that Peter was being financially abused and they were worried about his ability to look after himself. His local council then took action which meant he was held in a locked unit for 17 months. Although the records said Peter went with them voluntarily, he was clearly reluctant to do so, and distressed. Facts are disputed but he is said to have been wearing his dressing gown at the time, without trousers or pyjama bottoms.

This case went to Court, where it was decided that the council’s treatment of Peter amounted to breaches of his human rights to liberty and to respect for private and family life (Articles 5 and 8 of the HRA). These breaches were said to be made worse because had they not happened, Peter would have continued to live at home, where he was happy, with support. The council ended up giving Peter £60,000 in damages for false imprisonment. But most importantly, Peter was able to return home, reunited with Fluffy and his friends. He now has the right care support package and is reportedly happy and contented.

To read more stories like this visit https://www.bihr.org.uk/