Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Calculating the cost/benefit of advocacy

Today, we’re absolutely delighted to be able to bring you the final film from our Older People’s Cancer Voices work.

George, Varun and Carmela from EY (formerly Ernst & Young) explain how it is they came to report that for every £1 invested in our cancer advocacy work, there is a £6.70 social, financial and economic return.

George talks about how working with the real life cancer advocacy stories we provided has opened his eyes to the fact that for those affected by cancer, “everybody’s story is different”. Using the data and stories we provided George and his team sought to “get behind the numbers and got into the detail of what those numbers meant for people’s lives in reality.”  

George

Varun explains how anything in society that we do has a social return on investment, “because they’re associated with uplifting the welfare of a society.”

Varun

Carmela discusses how when looking at issues of Voice Choice and Control, they could see how the support of an advocate gave people the wherewithal to once again make decisions for themselves.

Carmela

George describes advocacy as a matchmaker, its support “helped people access things that are already there and that’s why it was able to create big returns for a low cost”. 

You can view the film here

and access the EY report via the OPAAL website

Marie McWilliams, OPAAL


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Lost in transition?

Today Rhonda Oliver, Project Manager from Barnet Macmillan Cancer Advocacy & Advocacy in Barnet, discusses the issues facing older people, especially in transition from hospital and what Advocacy in Barnet is doing to help:

The National Health Service (NHS) is bursting at the seams and struggling to cope with record levels of demand. Services are stretched to the limit and if that is not bad enough, hospital and GPS are being affected by one of the worst flu outbreaks in recent years

We have all seen the pictures of ambulances queuing outside A&E and patients are facing long delays to find an available bed.

Yet, according to the King’s Fund the total number of NHS hospital beds in England has more than halved over the past 30 years, from around 299,000 to 142,000, while the number of patients being treated has soared. The UK currently has fewer acute beds relative to the size of its population than almost any other comparable health system. It is a tribute to the dedication and phenomenal hard work of NHS staff that they are able to deliver the high quality care and support that patients require in the face of such challenges.

The King’s Fund further report that the number of general and acute beds has reduced by 43 per cent since 1987/8. Most of this fall is owing to closures of beds for the long-term care of older people. Innovations in medicine, including an increase in day surgery, has also had an impact by reducing the time that many patients spend in hospital.

The rate of decrease in bed numbers may have slowed in recent years, but avoidable admissions may be prevented by making better use of existing bed stock, reducing variations in length of stay and improving the discharge of patients.

The focus should be on older patients who stay in hospital a long time, but this depends on there being enough capacity to provide appropriate care outside of hospital. Evidence suggests that intermediate care capacity is currently only enough to meet around half of demand and cuts in funding have led to significant reductions in publicly funded social care.

The need for efficient discharge planning has never been so pressing.

Advocacy in Barnet has found that 78% of older people in Barnet experience isolation, helplessness and despair as they move from hospital to home or into residential care, often without proper care, food, money, possessions or treatment plans and many without family to support them. Only 55% had plans explained to them and 100% said the plans did not provide the support they need after discharge.

Rhonda Oliver

Hospital discharge planning should consider the patient’s needs after a hospital stay and they should not be discharged from hospital until:

  • They are medically fit
  • They have received an assessment to look at the support they need
  • They have been given a written care plan that sets out the support they will receive to meet their assessed needs 
  • The support described in their care plan has been put in place and it is safe for them to be discharged.

Advocacy in Barnet has received funding to champion the rights of disadvantaged people 50 years old and over and we aim to support lone older people in hospital to make informed choices and decisions about their treatment and future care especially in relation to discharge arrangements.

We will provide independent advocacy to support people to access the services and information they need to improve their stay in hospital and to avoid re-admission once they have been discharged.

We are grateful to our funders: the Mercer’s Company, the Garfield Weston Foundation  and the B’nai Birth Leo Baeck Lodge (London) Limited for providing support to enable us to provide this essential service to the residents of Barnet.

Rhonda Oliver, Project Manager, Advocacy in Barnet


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Trick or Treat?

Today Rhonda Oliver of Advocacy in Barnet provides us with food for thought:

Halloween is looming – rooted in the ancient Celtic festival of Samhain, it marks the end of Summer and the harvest, and the beginning of the cold dark winter associated with human death, when the boundary between the living and the dead becomes blurred.

According to the Office of National Statistics more people die in winter than in summer and the Grim Reaper pays most house calls in December, January and February. So, if you do not want to think about death and dying, look away now!

Is there a right time to have an advance care plan? Who should have one? What should it cover?

A care plan is for anyone, with increasing relevance for older people who are likely to be nearing the end of their lives. However, it could be for someone who has particular health needs or someone who just wants to record their choices and preferences for their care and treatment for any other reason.

It is a good idea not to leave this until a crisis happens when you may not be able to participate in making choices. In an emergency health professional may have to make rapid decisions about your treatment and a care plan can help to ensure that you get the treatment that is best for you and that you would have wanted.

A care plan is created through conversations with your family and carers, your health professionals and you. You keep the plan with you and ensure that it will be available immediately in an emergency, say to ambulance crews, out-of-hours doctors, accident & emergency and other hospital staff if you are admitted. Some people keep their care plan displayed on their fridge door; others leave it inside the fridge in a plastic bag! This is often the first place an ambulance crew will look.

The plan will guide clinicians to balance the priorities for your care, i.e. would you want them to focus on treatment to prolong life or to focus mainly on providing comfort? The plan should include your choices regarding  treatments that you would want to be considered for or those you would not want, for example would you want cardiopulmonary resuscitation (CPR)? If the answer to this is no then you should flag an advance decision to refuse treatment (DNR) or any other important planning documents in the plan. It is very important that your understand the parameters and implications of an advance decision to refuse treatment and that you discuss this with your GP and family.

Talk to your local advocacy organisation if you are thinking about your future care. It will support you to make your choices and preferences heard.

Once you care plan is made it is not set in stone and should be reviewed on a regular basis. It should, however, provide you with peace of mind so you can cuddle up on the sofa with your loved ones, with a cup of tea (or something stronger), watch the telly and wait for spring.

 

Rhonda Oliver, Project Manager, Barnet Macmillan Cancer Advocacy & Advocacy in Barnet


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Spreading the word

In today’s post we hear about a well spent Summer’s day in Northumberland….

On Wednesday 30th August, Age UK Northumberland enjoyed a sunny day in the Sanderson Arcade in Morpeth promoting their Macmillan funded cancer advocacy project.

The Sanderson Arcade is a smart shopping centre in the heart of a beautiful market town in Northumberland. With a population of over 16,000 Morpeth is particularly busy on a Wednesday which is a market day with people visiting from all over the county.

 

 

 

 

 

From the moment the gazebo was erected until the end of the day visitors to the stand were frequent.  Lunch time was particularly busy. With a key position next to the entrance to Marks and Spencer in the middle of the thoroughfare there really was no way to avoid our presence!

Our new leaflet explaining the project was handed out to passers by, queries about our services were answered and our pens, key rings and sweets were eagerly received!  One of our volunteers, an ex-cancer radiologist put up a display about radiotherapy which was particularly well received with a number of people asking questions about the process.

This was a wonderful opportunity to explain to people how Age UK Northumberland’s Cancer, Older People and Advocacy Project works and what being an advocate entails. Knowing that someone can accompany you to appointments or can help you identify benefits and allowances you may be entitled to was of particular interest to those who had or knew of someone with a cancer diagnosis.

 

 

 

 

 

The success of the stand was made possible by the stalwart support of our volunteers who all stayed well beyond their allocated slots.  Their enthusiasm and willingness to share their knowledge and passion for the project was clearly visible.  All in all, a great way to spend a summer’s day!

Karen Renner

Volunteer Coordinator – AGE UK Northumberland Cancer Advocacy Project

 


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And now for some good news…

Today, Angela Jones advocate at Age Connects, Cardiff and the Vale provides us with some uplifting news:

It is with great delight that we are able to inform you that from April 2017 – April 2018 we have been funded via Macmillan Wales to continue the Cancer, Older People and Advocacy project and support older people living in Cardiff and the Vale.  Words can’t express how chuffed we are at this good news. 

Angela

The Cancer, Older People and Advocacy project has gone from strength to strength and all professionals and service users who have been involved, have all been very positive about the support we provide to clients, and the benefit and impact this has had on their lives. 

It can be an arduous task setting up a new project, it takes time and dedication, and we are so pleased that we are here for a while longer! We are hopeful to secure further funding beyond April 2018 to continue our vital service to people affected by cancer.

Angela Jones, advocate, Age Connects Cardiff & the Vale


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Lightening the transport burden: how Advocacy in Barnet helped older people with cancer to attend their chemotherapy appointments

Today Rhonda Oliver of Advocacy in Barnet highlights some of the difficulties faced by those attending chemotherapy appointments:

As many older people affected by cancer will tell you, getting to and from their chemotherapy appointments can be a nightmare.

Public transport in the UK is dirty and overcrowded and people worry about picking up illnesses when their immune system is suppressed by chemotherapy. Journeys to and from Central London from the London Borough of Barnet may involve multiple bus and tube journeys. For older people affected by cancer the prospect of such journeys when they are feeling exhausted and unwell is very dispiriting and when they finally get home they are too tired to prepare a meal and eat it.

My daughter’s main hospital is in London and parking is nigh on impossible. We are unable to use public transport owing to her condition. She has an inoperable brain tumour which causes her to have frequent seizures, making it very unsafe to use the London Underground”.

If patients are eligible for the ambulance service there is usually a long delay while the ambulance winds its way around Barnet. One of our clients said:

We do qualify for hospital transport, but this frequently entails a 2 hour wait for our journey home and this is extremely tiring and stressful, especially as the journey itself usually takes an hour or so – depending on the traffic – and whether or not there are any other pick-ups/drop offs en route”.

Many patients feel too unwell to drive themselves and may have to rely on friends and family to drive them to their appointments. Parking is often difficult to find and the parking fees may be prohibitively expensive. There is also the stress of worrying about an appointment over-running time, with the prospect of a parking fine to add to the misery.

So how was Advocacy in Barnet able to help to reduce the burden of transport on these patients? It did so as the result of an extremely generous grant from Barnet CancerLink, a local non-medical Barnet charity. This grant enabled us to work with two local taxi companies to provide a free taxi service for patients to and from chemotherapy and related cancer medical appointments. The grant also enabled us to provide a cooked meal on request when people were too exhausted to cook after their appointments.

We were able to help 100 people affected by 22 different types of cancer: 53 females aged 25-84 and 47 males aged 51-82. Some people had multiple return journeys.

Being able to book a cab, which will turn up to collect us in a very reasonable time and which is just for ourselves, makes a huge difference to our day. My daughter is much more relaxed which has a direct effect on the number of seizures she has”.

This last week alone, my husband went back and forth to Barnet General on Monday, Tuesday, Wednesday and Thursday. The total cost to him was £72. The outlay since August last year would have exceeded £2000 had it not been for Advocacy in Barnet and some wonderful neighbours”.

The grant took effect from December 2016 until June 2017, when the grant was exhausted. We are very grateful to CancerLink Barnet for enabling us to demonstrate that people living with cancer are in desperate need of help with their transport needs and to show its impact on cancer patients in Barnet.

Rhonda Oliver, Project Manager, Barnet Macmillan Cancer Advocacy.


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What Price Advocacy?

Today our thanks go to Jan Dyer of Dorset Macmillan Advocacy for taking the time to share her peer advocate’s point of view:

Cancer advocacy makes a difference now, and could make so much more. Advocacy saves the NHS money and provides better quality care, it makes cancer journeys better and easier to undertake.

Yes, you’re right, it’s very difficult to prove, it can’t be easily quantified. I could give you plenty of examples, but in pounds and pence, no. But I can tell you, that over the last three years, working as a Macmillan Peer Volunteer Advocate, I have seen it for myself. Let me share some of my experiences and pose some questions……

The patients, friends and families I meet don’t always have the tools to hold their home teams together and support their structure, they are floundering in unknown territory, with no experience to draw on.

There is a presumption that every relationship is in a good place at diagnosis, and that would be great but it isn’t the reality. Some rally and rise to the challenge, but some carry baggage on this trip, which can complicate the decision process and can make the going even harder.

Realistically, how much time do our overworked medical teams have to talk to patients and support team? For some, nowhere near enough.

If communication becomes difficult between home and medical teams, who steps in, pursues and explores possible solutions to get things moving forward again? How much easier is it to deal with patients if they come prepared for appointments because they’ve had time to discuss their worries, fear, frustrations and options in an objective environment first? Sometimes patients just want to walk away from appointments having asked all the questions they wanted to, with no ‘I wished I’d asked’’ moments later, with all the confusion and frustration that brings. Let’s face it, if it’s all new, how do you know what you don’t know?

Jan

Then there are the carers who, however well meaning, may not be not equipped for the very new situation in their life. Who want to do their very best, but don’t know how to or have time to find what they need. Who supports them? Anybody can struggle when practical problems come along, meeting unfamiliar challenges in an uncharted world.

Who will have time to discuss and help them make an end of life plan? When all around you, fearing a bad outcome are urging ‘Just be positive’ and driven by a ‘if you don’t talk about it, it won’t happen’ mentality? Who tells them, ‘you don’t have to be super positive every day, its normal to have bad days’, and gives them a safe haven to express this?

The possible situations are endless, and I haven’t even got to the easier basics like ’How can I visit my husband in hospital, I don’t drive?’ ‘How can I pay my bills, when I’m not earning at the moment?’ ‘How can I get my toe nails cut?’ etc. etc….

As an advocate, I have supported real people through all of this and more. I am trained and prepared to have the conversations that people don’t necessarily want to have with loved ones, if indeed they even have anyone to have these conversations with at all.

I would like the service to be offered to every person affected by a cancer diagnosis. The decision to accept the offer is theirs, the right to change their minds, at any time, one way or another is theirs. But in not making them this offer, it is in fact depriving people of a real opportunity. Advocacy offers each individual who is on an ‘unasked for journey through the unknown’ to have a ‘tailor made’ experience and to regain some feeling of control – which could completely change things for them – and in fact for everyone involved.

As an advocate, I have a few frustrations, but my primary one is clear; I don’t understand why an advocate is not offered to everyone.

Jan Dyer, peer advocate, Dorset Macmillan Advocacy


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Signposting to other local sources of support

We keep on top of new services and sources of support for people affected by cancer in Dorset because we recognise that people can benefit from many different types of help. Regional charity Wessex Cancer Trust  opened a support centre in Bournemouth last year which is open three days a week for people to drop in.

The centre manager, Emma Ormrod, recently visited us at Help and Care and met Advocacy Manager, Naomi Unwin, Macmillan Senior Advocates/Coordinators Jo Lee and Kathleen Gillett.  We discussed how our two services dovetail.  The drop in is ideal for people who are able to get out and about and would benefit from conversation with trained volunteers and other people affected by cancer on an adhoc basis.  Our service is ideal for those who find it more difficult to travel for whatever reason and offers regular support through an on going partnership with one trained volunteer. We can also give support at the person’s home and accompany them to medical appointments.

Naomi Unwin, Advocacy Manager, Help and Care; Emma Ormrod, Bournemouth Support Centre Manager, Jo Lee, Senior Advocate, Dorset Macmillan Advocacy

We’ve created an ‘at a glance’ document to help the volunteers at each service be aware of what the other service offers to facilitate signposting and referrals.   In fact our services already share a volunteer and advocates have visited the centre to accompany people who asked for support in going there for the first time. We look forward to continuing to work in partnership for the benefit of local people.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy (Help & Care)

 

 


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At the Staffordshire Dying Matters conference

Kath Curley of Cancer, Older People and Advocacy delivery partner Beth Johnson Foundation and Staffs & Wolves Cancer Advocacy and Support Project Manager shares a post recently published on their own project blog. She tells us about her attendance at a recent conference marking Dying Matters Week:

Dying Matters Week in Staffordshire was celebrated by a Palliative and End of Life Conference organised by University Hospitals of North Midlands on Thursday 11th  May. The Conference was entitled “I didn’t want that: Why patients’ wishes matter” and was attended by over 250 delegates from across the Midlands. BJF had a stand to promote the dementia and cancer advocacy projects and was therefore able to join the Conference.

The conference was packed

There were some eminent speakers including Dr Sara Russell, Head of Research and Clinical Innovation at Hospice UK, who showed a very thought provoking film from ZdoggMD; “Ain’t the way to die” which you can find here  

Sara’s message was that professionals should be asking “What matters to you?” rather than “What’s the matter with you?”

Amanda Cheesley, Professional Lead Long Term Conditions and End of Life Care with the Royal College of Nursing followed on and very much reiterated Sarah’s messages.  She opened by talking about the “essence” of the person – who we are, what we are – doesn’t go away when someone  dies or is dying. We should look at what is important to people emotionally, physically and spiritually.

 Jan Cooper, Regional Liaison Advisor at the General Medical Council discussed the End of Life/ Palliative Care Guidance. Decision making should be a partnership and this will require a change of culture. At one time professionals made the decisions, then it swung to patients making the decision but it should be co-production – joint decision after listening, discussing and sharing information.

 

After lunch there were two more “professionals “   presentations from Claire Henry – the Chief Executive Officer of the National Council for Palliative Care and Dr Katherine Bristowe , a post-doctoral  researcher at the Cicely Saunders Institute, Kings College, London. She has a particular interest in widening access to palliative care, and recently worked on the ACCESSCare project (funded by Marie Curie), a national qualitative interview study of LGBT people facing advanced illness and bereavement.

At this Conference the best was most definitely left until the end. The Conference closed with a presentation from Tommy Whitelaw, Project Engagement Lead for Dementia Carer Voices. He was a carer for his late mother Joan for 5 years as she had vascular dementia. He told us about his beautiful mother, Joan Whitelaw, NOT the disruptive lady in bed 6! He talked about his experiences with health professionals during his time as  a carer and the importance of reassuring carers that they are doing a wonderful job. 

Tommy travels across Scotland to raise awareness of the impact of dementia on families and the importance of empowering carers to carry out their difficult but vital role. Lessons to be learnt for people caring for someone with any terminal condition. There was not a dry eye in the Conference!     

Joe Potts, Macmillan End of Life Care Facilitator, University Hospitals of North Midlands  is to be congratulated on a stimulating, thought provoking conference – a job really well done. 

Kath Curley, Staffs & Wolves Cancer Advocacy and Support Project Manager


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Impetus Cancer Advocacy Service gains second Quality Mark

Congratulations and well done to our cancer advocacy delivery partners who have achieved the OPAAL Quality Standards for the provision of advocacy support for older people affected by cancer. Today we find out more from Macmillan Brighton and Hove Impetus:

“Special thanks to Rebecca Turnull-Simpson, a local lawyer and one of our dedicated volunteer cancer advocates. Her time given to the quality mark audit process has enabled the hard work of our whole fantastic team to be recognised.” So says Sam Bond, Macmillan Impetus Cancer Advocacy Service Manager.

 

Impetus staff and volunteers with their Quality Standards certificate

The first quality mark achieved was the Advocacy Quality Performance Mark which is a national quality assessment and assurance system for providers of independent advocacy. Impetus achieved it in September 2016.

Quality standards have been awarded for the provision of specialist advocacy support for people affected by cancer. These standards set out what clients can expect and are a way of demonstrating professionalism and commitment in independent cancer advocacy service delivery. The service puts the interests of clients first, is safe and effective and promotes trust through a professional and person centred approach.

Macmillan Impetus Cancer Advocacy service is a free service funded by Macmillan. The service is provided by Brighton & Hove Impetus – a charity working to reduce isolation and improve well-being.  We provide 1:1 support to people affected by cancer who are often facing challenging life situations. The service supports them to express their needs and have increased choice and control.

 

Do you know someone who is affected by cancer or who has a close family member affected by cancer? Impetus can provide a trained advocate who will visit them at home or in hospital, build a relationship of trust and find out what is important to them.
Do you want to become a volunteer Cancer Advocate?

Please phone 01273 737888 or email canceradvocacy@bh-impetus.org

Sam Bond, Service Manager, Macmillan Impetus Cancer Advocacy