How I (Try to) Avoid Advocacy Burnout

One of the many benefits of working with health professionals, in this case Dr Charles Campion-Smith who sits on our National Health Professionals Board, is that they often so freely share valuable information. Charles has introduced me to a smart phone (iphone and Android) app that may well be useful to advocates and patients.

The Cancer.net app is from the US but parts are very relevant to UK.

In particular the ‘Questions’ tab takes you to a page where someone can write questions (or select a number of provided ones) they want to ask – typically in a consultation.

The app then allows the anwsers to be recorded on the phone.

Audio taping consultations has been used successfully for some time but this is much less cumbersome and preparing questions together might be useful to advocate and patient.

I explored this app and came across a very interesting article written by Anita Mitchell which I know will be of great interest to our own advocates. I have now secured the relevant permissions to reprint this article in full and would like to thank Anita and the American Society of Clinical Oncology for allowing us to share this article.

Voices on Cancer is a Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Anita Mitchell was diagnosed with stage IV colon cancer in 2005. She is the cofounder of the Colon Cancer Stars of Washington State.

My advocacy story
I had not planned to become a colon cancer advocate. It is something that I just became. I suppose after everything that happened to me, I had to find meaning and purpose in my diagnosis.
I fell into advocacy in 2005, when I was diagnosed with stage IV colon cancer after just turning 41. The fact that my primary care doctor disregarded my symptoms and missed my diagnosis fueled my passion to become an advocate for prevention and a voice for those diagnosed at a young age. I was the third parent at my children’s school to be diagnosed before turning 50, which is the recommended screening age for colon cancer. So, I began educating families about screening and the symptoms of colon cancer. One of the first ways I did this was by starting an awareness day at my children’s school—I called it Dress in Blue Day. Years later, it became a national event!
I wanted to spread the word. After I learned how preventable my case was, I didn’t want this to happen to anyone else! But there were other things going on in my life as well. I was fighting for my life, trying to raise my 3 kids, and dealing with a crumbling marriage. It was a lot to balance.
Still, I started getting involved with some local cancer survivor programs. Then I began volunteering for LIVESTRONG, American Cancer Society, Colon Cancer Alliance, Fight Colorectal Cancer, and Gilda’s Club. Soon after, I found myself on committees for my hospital and state. I even posed for the Colondar for the Colon Club!Eventually, I started my own nonprofit, Colon Cancer Stars of Washington State, with the help of my Washington State Colon Cancer Task Force.
Advocacy is needed to give patients and survivors a voice when cancer becomes faceless. I clearly remember sitting at the ASCO Annual Meeting one year as a patient advocate. I was still on chemo, listening to the doctors talk about how a drug gives you maybe 1 extra month of life, wondering if the cost was worth it. I wanted to jump up and scream, “Of course it is!”
In the end, I got very lucky and was out of treatment after only 2 years. Even though I survived, I still lived from scan to scan and needed to find meaning in my life apart from my familly.
Handling advocacy burnout

When you are an advocate, you are smacked in the face with limited time and tons of things you want to do and achieve. You have to quickly learn to prioritize what is important. If you don’t, you can get burned out on advocacy.Here are some of the strategies I use to try to keep burnout away.

• Learning to say no. I quickly learned I would have to become comfortable saying no to different requests. This was not always an easy thing for me to do. I realized that I had to believe what I did was worth my energy and my time.
• Keeping balance. This is very hard for me, so I like to think of my life as a pie, and cancer is a slice of it. Sometimes I have a few slices, but if it becomes too many, I know I need to take a break. Cancer affects the whole family, so I had to be mindful that sometimes my children did not want to hear about colon cancer advocacy. For them, it was enough that they had almost lost their mother to it!
• Find support. I have learned to reach out for support from close friends who are cancer advocates. They understand the sadness and frustration of losing people to the disease because of the slow pace of science, politics, or lack of funding.
• Step away when you need it. Like they say during the airplane safety messages, “Put the oxygen mask on yourself first before helping others.” I have found this to be the case in cancer advocacy, especially when it comes to online help. These groups can be overwhelming at times, and sometimes you need to turn off the computer for a while. So when I need to, I step away for a bit and I do not let myself feel guilty about it.
• Seek what is meaningful and joyful in your advocacy. I try to slow down and analyze what brings me joy and a sense of meaning. I look for signs that I am going in the right direction. Sometimes it is a simple note saying, “Thank you, I got screened after I read your story in the paper” or “I slept all through the night for the first time since my diagnosis after I talked to you.” I once had someone say she kept my story in her pocket. You never really know how many people your story will touch or even save, but it is many more than you will ever know. So I choose to carry on!

Anita Mitchell Voices on Cancer

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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.

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

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:

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

 

 ‘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 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 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

Smarter communicating is the name of the game

Last Tuesday OPAAL Trustees and staff came together to look at how we could develop our individual and collective social media skills. We were tutored by a very patient Jude Habib of Sound Delivery who managed to get the best out of what was a ragtag bunch, all of us it seemed at different experience levels.

We looked at how we made use of Facebook, Twitter, our website and this blog.  We discussed how we could do things smarter and make everything we produce more eye catching and attention grabbing. We’re absolutely delighted that our newest member of staff, Angela Broadbridge, comes with a whole range of social media skills. Skills we’re sure to make good use of in the coming months and years.

As you can see from our photo taken at the end of the day, a good time was had by all.

This is how we looked at the end of the day!

We left tired but invigorated and also determined that we’ll all contribute to better telling the stories that matter; the stories of the older people our members support and the wonderful work that advocates do every day. We have a follow up day for staff next month and are really looking forward to it.

Our thanks go to BIG Assist for funding our social media skills training.

Marie McWilliams, National Development Officer, OPAAL

A quick chat!

Recently Marie from OPAAL recorded a chat she had with Kathleen from Dorset Cancer Advocacy about how our pilot project is going from Kathleen’s perspective.

Have a listen to what Kathleen had to say by clicking below. You may need to turn the volume up to hear what was said and apologies for the background noise.

 

Meeting our Volunteer Advocates

Between July and August this year I travelled the length and breadth of the country visiting our volunteer advocates. I was visiting our cancer support projects with the aim of evaluating the volunteer experience. We do have eternal evaluators who have been busy all summer long interviewing a wide range of project stakeholders, however I myself like to conduct some internal evaluation particularly of our volunteers, as this gives me a rare opportunity to thank them in person for the invaluable work they do supporting older people affected by cancer.

The first thing I have to say was that it was a truly humbling experience for me. I spoke with Tom, Evelyn and Anne from Gateshead; Richard, Pauline and Janet from Dorchester; Maddie, Marion and Bob from Bournemouth; Helen from Sefton and finally Pauline and Yvonne from Stoke on Trent. Without exception I was immediately struck by the genuine warmth of these people, their desire to help and offer support to others in similar situations to those in which they had found themselves earlier in their lives shone through. When I asked how they came to volunteer all had a uniquely personal and moving tale to tell. These stories mostly focussed around their experience of cancer, how this had changed their lives and how, upon coming through it they determined to make the lives of others just that bit easier by sharing what they had learned. Volunteers told me “As a cancer patient I see a real need for this project and want to help out with whatever I can do to support this work” and “I believe this project has the potential to benefit a lot of people.” “I have never felt so appreciated in voluntary work as I do here” quote one lady who had volunteered with other projects before.

Kath with volunteer advocates Bob Smith, Marion Summers and Maddy Smith

I asked about how well the volunteers felt equipped to cope with the challenges of supporting older people affected by cancer, without exception volunteers spoke movingly of the tremendous support they receive from their advocacy supervisors stating how they really valued this personal support as it gave them opportunities to explore in depth the ways in which they could help others, and learn from others experience.

One volunteer noted that mainly as a result of the excellent training and support she has received: “I have much more awareness of cancer and its impact on older people and the wide range of services available to support OPABC”.

When describing their voluntary work one person said “It’s always interesting, sometimes challenging, always rewarding, work with lovely people, never pressured, always supported.” whilst another quoted  “I found the role of a volunteer advocate very rewarding though it is not without its challenges. “I enjoy the one to one contact and feeling useful as I’m able to offer emotional support and able to help others to look beyond their present problems”

When we spoke of our volunteers intention to continue to volunteer with the project many people gave moving accounts of why they wish to continue to offer their services, some people are even considering a change of career they have been so motivated by their volunteering experience.

“I would really like to make the move into independent advocacy work as a second career, I’ve enjoyed and benefitted from the training I’ve received and I’m very happy to undertake all other training offered in this area. I am also mindful of the fact that the more experience I get supporting others the more I will learn. I also volunteer for a local Douglas Macmillan Hospice and pick up extra skills and knowledge there.”

“I feel this project is of vital importance to the people of North Staffordshire who meet all the criteria for the services of an advocate. 

“I wish to use my experience as a nurse and cancer patient to help support other people in similar circumstances”. 

“ I retired with a purpose of doing positive things and the hope that it keeps my brain active”.

“I believe this project has the potential to benefit a lot of people.”

“As a cancer patient I see a real need for this project and want to help out with whatever I can do to support this work”

“I want to continue this role, work more with both patients and carer’s as I feel there is not enough support for carer’s sometimes I feel they have different support needs than patients” 

I should like to publically record my thanks and those of our partner organisations to our wonderful volunteers without whom we would not be able to offer the much valued advocacy support services we offer to older people affected by cancer, most of whom could not find this support from elsewhere.

My report Volunteering Voices feeds into our project evaluation which will be available to read here during November.