Advocacy support is unfortunately still relatively unknown..

Today Kathleen Gillett of Dorset Macmillan Advocacy argues that advocacy support has a role to play in breaking the negative cycle of cancer care:

The Patients Association has chaired a working group on ‘Transforming the cycle of cancer care’.

The working group argues that ‘currently there is a negative cycle in cancer care, where a short-term approach leads to rising costs in cancer, makes fewer resources available, provides inadequate patient support which re-enforces the need for a short-term ‘just managing’ approach.’  It proposes ways to break the negative cycle.

To address this challenge, The Patients Association and Bristol-Myers Squibb are working alongside experts and patients from across the cancer space to identify new models of service delivery, showcase best practice, and provide real improvements in patient care.

The report discussion includes sections and recommendations on:
Identifying, incentivising and implementing best practice
Developing effective prevention strategies
Implementing best practice in the early diagnosis of cancer
Delivering timely access to treatment
Engaging patients in delivering innovative care pathways

To my mind the report blurs the issue of patient engagement and involvement in service improvement and that of individual patients who are ‘engaged’ and active in their own healthcare journey. Both are important and worthwhile while distinct from each other.

I think that the argument for ‘engaging patients in delivering innovative care pathways’ reads like a explanation of the benefits of independent advocacy support:

‘Educating patients with cancer about self-management and empowering them to play an active role in the decision-making process was considered to likely result in an improvement of patients’ knowledge, understanding of their condition, adherence to treatment and engagement in their healthcare. Whilst not all patients will want to play an active role in their treatment and care, it is important to provide patients with the opportunity and the choice to make their preferences clear and also tell us what a “good” treatment outcome looks like for them.

‘The Working Group described these users as “activated patients” who can lead the charge for the adoption of best practice care. According to Working Group attendees, the evidence suggests that “activated” and informed patients use an average of 20% fewer resources than less informed counterparts.’

Advocacy support is unfortunately still relatively unknown and it is not uncommon to read policy reports in both health and social care spheres that appear to describe it and recommend it without ever using the term. I believe that independent advocacy support and particularly that provided by peer volunteer advocates has a role to play in breaking the negative cycle of cancer care. It can certainly be preventative and facilitate timely access to treatment in addition to empowering patients. I would like to see it recognised as an integral part of the cancer care pathway, recognised as best practice and implemented nationally.

Kathleen Gillett, Coordinator Dorset Macmillan Advocacy

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Over time I was able to build a trusting and secure relationship with Valerie

Aneesah, advocate at our delivery partner ICANN, tells us about Valerie (not her real name) and her issues around divulging that she is HIV:

I received a referral for Valerie who had used us as a service in our previous advocacy work. She was diagnosed with breast cancer but was in the very early stages of recovery. Therefore, she was extremely emotional when we initially met. Because I already had an established relationship in our previous advocacy service Valerie felt comfortable to talk to me openly about her feelings and concerns.

Valerie’s ethnicity and cultural background played an important role in how she felt and how she mentally perceived how she should be handling her medical problems. She’s from African descent and although she was living with her sister she was of the strong opinion that she needed to be emotionally strong and expressing her true feelings and worries was a great sign of weakness. Yet equally it was clear to me that these vulnerabilities and insecurities were taking a very big toll on her and was having a far deeper rooted impact on her mental health.

These feelings of guilt and shame were exasperated as she had also been diagnosed as HIV positive some years ago. Due to Valerie’s concerns she felt that this was another medical condition that needed to be keep hidden. What came through in our conversations was that although fortunately she had a very good and trusting relationship with her consultant the diagnosis of breast cancer meant that she had to constantly disclose the fact that she was HIV positive to other medical health professionals, particularly during the period she was undergoing chemotherapy as the requirement was to have regular blood count checks. Because she was highly conscious and anxious about her diagnosis of HIV coming to light, she found the whole treatment procedure very tense and traumatic.

By the time she established contact with me she had many unexplored and suppressed worries. Her main reason for contact was an approaching benefits assessment. Valerie felt she was forced into a situation where she would have no choice but to discuss medical issues she was highly uncomfortable with.

In our meetings which followed over a couple of weeks I was able to talk and reassure her that she should not feel shame or guilt towards her condition. As time went on we met regularly and Valerie was able to make the vital step of being able to talk about her condition without supressing her true feelings. I was able to reassure her that for the purpose of the benefit assessment it was vital to disclose both of her medical conditions in depth as her eligibility would depend on this.

Aneesah

Over time I was able to build a trusting and secure relationship with Valerie and this really helped me to advocate on her behalf. Consequently when we were in the assessment she was able to depend on me to talk on her behalf on occasions when she found things difficult to explain to the assessor or when she became uncomfortable.

As a result, Valerie was successful in receiving the benefit and the experience allowed her to recognise that professionals in general work using the ethic and principles of being impartial and non-judgmental. The experience clearly demonstrated to her that although she felt that by disclosing her medical conditions she would be judged and perceived in a negative and possibly prejudiced way, this in reality was clearly not the case.

As a result of this experience and advocacy support we were then able to arrange specialist focused counselling services as a more long term plan to deal with her anxieties.

This particular experience demonstrated to me and to Valerie that by working on her emotional insecurities and coming to terms with her health condition it was going to enable her to consciously make the effort to attend future appointments in relation to regular health checks at the hospital. Ultimately advocacy support empowered her to be in control of her health, which hopefully now will contribute to improving her quality of life.

Clinicians and Patients: Balancing the Conversation

Today Jen Rimmer, advocate from Dorset Macmillan Advocacy and Dorset Advocacy, looks at the barriers to patients being more involved in decisions affecting their care:

BBC Radio 4’s Inside Health (listen here: http://www.bbc.co.uk/programmes/b07vs2p0) reported on NHS Wales’ new initiative ‘Choosing Wisely’ which is attempting to challenge the general atmosphere that doctors know best and encourage patients to engage more actively in the decision making process around their tests and treatments.

Dr Paul Myers, Chair of the Academy of Medical Royal Colleges in Wales who is leading the new initiative was interviewed on the programme. He explained that the NHS is, “often too quick to offer patients treatments and interventions that don’t always benefit them and may even harm them…up to 10% of interventions in healthcare are inappropriate and perhaps even harmful”

To tackle this, patients are being encouraged to ask 4 key questions of their clinicians:

• What are my options?
• How likely is the treatment to benefit or harm me?
• Do I really need it?
• What can I do to help myself?

In tandem there is work going on to ensure that the clinicians are more receptive to patient questioning in an NHS culture dominated by time constraints and clinical decision making processes increasingly driven by guidelines and protocols.

Dr Myers describes findings that patients, “continually express that they’d like to be more involved in the decisions made about them” but at the same time many patients state that they have difficulties having conversations with their clinicians.

The Choosing Wisely initiative acknowledges that failing to understand patients’ needs and wants often leads to high levels of patient dissatisfaction and that spending time in the initial consultation listening and identifying the concerns, values and preferences of the patient pays dividends later down the line.

But what are the barriers to achieving this and how can these be addressed? Well for those of us who already work in healthcare advocacy, one useful strategy is clear!

Dr Margaret McCartney, a regular contributor to Inside Health, highlights some of the issues – time constraints in appointments and the problem in assuming that every patient is able to take in and process the information given to them in such a way as to reach an informed decision.

Jen Rimmer

As advocates, we see this all the time. Ensuring that a person with a known cognitive impairment or learning disability is supported to digest information and come to the decision that is right for them is a given but we also see usually assertive and self-advocating individuals floored in the face of important and stressful medical decision making processes. This can be due to the emotional and psychological shock they are feeling or simply being unfamiliar with the medical domain. Advocates have both the time and the skill to support patients to make decisions and, as we have seen here in Dorset, both cancer patients and clinicians report positive outcomes as a result of Independent Advocacy involvement before, after and at appointments.

It is great to see initiatives such as ‘Choosing Wisely’ and similar programmes are set to roll out across the UK later in 2016 but if the NHS fail to consider how Independent Advocacy could support this, they might be missing a trick!

Jen Rimmer, advocate, Dorset Advocacy & Dorset Macmillan Advocacy

this is about quality of life and life expectancy not about bureaucratic posturing and pounds, shillings and pence

Today’s post is from Rosie Young a peer advocate at Getting Heard (formerly Oxfordshire Advocacy). Rosie is also a local and National Cancer Champion and an older person affected by cancer who has used the Cancer, Older People and Advocacy service herself:

I read with interest the final report from Patty Doran, Cathie Marsh Institute for Social Research, The University of Manchester. 

A month ago Oxfordshire Advocacy’s Patient Experience Group, who are a group of volunteer advocates working on the Cancer, Older People and Advocacy Project,  currently also receiving cancer services themselves gave feedback to Healthwatch on our  experiences locally.  Surprise, surprise! this mirrored the key elements of the report and I share a few examples from this group below but first, a reminder of the Law on Consent, Risk and Information…

Montgomery v Lanarkshire Health Board Judgment 11th March 2015

The Supreme Court was fortunate in having submissions from Andrew Smith QC on behalf of the GMC.  The GMC submitted that an approach based upon the informed involvement of patients in their treatment, rather than their being passive and potentially reluctant recipients, can have therapeutic benefits, and is regarded as an integral aspect of professionalism in treatment. This was repeated in the Judgement in the Supreme Court

The court specifically stated that a patient must not be bombarded with technical information It is not up to the patient to find the correct expression of words. The onus is now firmly placed on the doctor to find out what their patients want to know

The doctor is under a duty to take reasonable care to ensure that the patient is aware of any: potential benefits, risks, burdens, side effects of each option, option to have no treatment and no pressure on the patient to accept advice.

 These stories are from Getting Heard’s Patient Experience Group who are not backwards in coming forwards!!

 One volunteer was told by the consultant “It’s your body – it’s up to you whether you have a biopsy or not”.  She added ‘I was given no explanation by my consultant as to what the consequences would be if I didn’t have the biopsy or what the follow up would be. Because of the change in my PSA reading (which had been stable for the past 5 years of tests) I decided to have the biopsy which indicated the presence of cancer. At no stage was I given any advice whether to have the procedure.’

Another volunteer felt some pressure to accept the ‘Gold Standard’ and alternatives were dismissed. ‘After an operation in my left lung for cancer I was diagnosed a year later with a primary in my right lung. I was under considerable pressure to have a lobectomy from the Clinical Fellow and Specialist Nurse despite having significant risk factors which would have impeded recovery. In consultation with my GP, Palliative Nurse and family I opted for an ablation. The Specialist Nurse when I told her (having submitted a risk assessment) contacted my Palliative Nurse to question my capacity to make a decision.’

Below are some more examples from our volunteers  where they felt they should have been given better information.

Number of operations required

‘The number and extent of operations should be clearly spelt out. I was told that I would need a second operation for my agreed implant only as I was going to the theatre for my mastectomy. The implant later had to be removed in a third operation’

Long term effects of operations i.e. nerve damage

‘I have gone from a sixty plus active person to needing a blue badge, upper limit attendance allowance with severe restrictions on my social life because of pain’

Dismissing the long term effects of treatment

‘The long term effects of chemotherapy and radiotherapy should be clearly identified. I was never told about the lifelong problems to be encountered with radiotherapy, from which I am still suffering.

Attitude of my oncologist dismissing treatment that is causing anaemia as of little consequence – putting in an email that he would ring me if he had time – ‘

Side effects and effectiveness of drug therapy

Medication, such as Anastrazole, should be discussed and the side effects clearly spelt out. I have just cancelled my final two years of Anastrazole due to side effects and having discovered, with some difficulty the percentage risk increase of a recurrence of cancer is only 2%.

Rosie

Overall our Patient Experience Group felt that urgent retraining in the legal and professional practical application of all aspects of Consent, Risk and Information is needed fast and nationally.  We must remember that this is about quality of life and life expectancy not about bureaucratic posturing and pounds, shillings and pence.

Rosie Young, Getting Heard (formerly Oxfordshire Advocacy)

New Macmillan project in North Staffordshire

In this post Kath Curley from programme partner Beth Johnson Foundation introduces us to new work going on in her local area:

I am pleased to be able to write about a new Macmillan funded project that is taking place in Staffordshire.

The Project is led by a familiar face to the Staffs and Wolves Cancer Advocacy and Support Project – Jo Coulson –  and Angie Bunn has taken up the role of Engagement Officer.

Cancer support services are perceived to be patchy or even inaccessible when the person affected by cancer is also Lesbian, Gay, Bi-sexual and Transgender (LGBT). There is a lack of solid evidence in relation to this area of need and an absence of information regarding effective approaches to service provision. With a view to improving this situation this project seeks to redress this by speaking directly to people from these groups and undertaking an in-depth assessment of current service “fit”. Recommendations will be made for service redesign based on the experiences recorded across Staffordshire, including Stoke on Trent. It is expected that the recommendations made will influence services nationally and may form the basis of a much broader review of services.

Jo Coulson

Scoping aims are to find out:

• What are LGBT people’s experiences of cancer treatment and support locally?
• What factors facilitate/inhibit open discussions between clinicians and LGBT patients?
• How well educated are local health professionals about LGBT issues (both clinical and personal – do doctors make assumptions)?
• What are awareness levels within LGBT communities about specific cancer risks, screening programmes, etc?
• Is there a need for specialised LGBT code of practice, cancer information and literature, etc?
• Can true ‘patient centred care’ disregard sexuality or gender variance?

It will use the following strategies:

• Face-to-face meetings & capturing stories
• Surveys and questionnaires
• Focus groups, workshops, roadshows
• Internet and social media
• Workplace engagement with clinical staff
• Information gathering and capturing experiences, identifying trends and gaps
• User involvement in project development                                                                                                                                                                                                                                                                                  

 We wish Jo and Angie all the best with this Project and look forward to the outcomes. I will try to keep you all up-to-date as the Project progresses.

Kath Curley, Staffs & Wolves Cancer Advocacy Project Manager

People were soon making friends and having a chat over a mince pie…

In today’s post Laura Thomas of Age Connects Cardiff & the Vale tells us about Carols and mince pies:

As a project that covers Cardiff and the Vale we wanted to plan something informal in Llantwit Major that would bring people together on a cold winter’s morning, and would reach those living in some of our more rural areas.

We decided on a Christmas themed event with mince pies, drinks and a raffle with donations from the local Co-operative and Filco supermarkets and Sainsbury’s in Cardiff (Age Connects Cardiff & the Vale is currently their charity of the month). This enabled us to offer all refreshments and the raffle prizes for free.

Information on our work and some prizes for the raffle

We opened the doors for 10.30am and after a short wait the room soon started to fill up. Some came with friends and others were dropped off by a relative or came alone. The atmosphere was upbeat and people were soon making friends and having a chat over a mince pie.

Angela, our independent advocate and Alice the volunteer co-ordinator spent the morning talking to the guests, explaining more about the Cancer Older People and Advocacy Project. We had our leaflets to give out and the OPAAL short film ‘Older People Affected by Cancer’ played in the background. Our volunteers were busy; Linda ran the raffle and Jeff took photos of the day.

Tenovus choir

We invited Tenovus Cancer Care Choir to come and sing some carols for us. Their singing was amazing and they really helped to get everyone in the Christmas spirit and had everyone singing along. It also gave us an opportunity to talk to those in the choir about the Cancer Older People and Advocacy project and they in turn were able to speak to some guests about the great work provided by Tenovus. All in all it was a great example of how working with another third sector organisation can benefit those that we support.

Laura Thomas, Age Connects Cardiff & the Vale

Networking with our local Macmillan Information Manager

In this post Helen Vernon, advocate at SPAC (Sefton Pensioners Advocacy Centre) talks about local networking and partnership working with Macmillan Cancer Support:

I recently spent time with the Information Manager for Macmillan Cancer Support based in Aintree Hospital, which has been based there for about four years.  There were a number of useful points that arose from our discussion and I hope it will result in an increase in referrals from this source.

The Information Manager and the Information Officer have both worked within the hospital in other roles for many years.  As a result they know a large number of the professionals and have made fantastic inroads with regard to promoting their service.  This is particularly true in the case of the Cancer Nurse Specialists (CNS).  It therefore occurred to me that our time would be best spent promoting our service to other professionals in the hospital.  Clearly the CNS were referring regularly to the Macmillan Centre who will in turn refer cases to the Cancer, Older People and Advocacy project as and when appropriate.

We discussed one of the cases that they were involved in and we reflected upon how they intended to proceed.  They acknowledged that there was a role for advocacy in this case and although on this occasion they had completed the work, we could have provided an outreach element that they were unable to.  The gentleman in question was aged 52 so I was able to reiterate that we are able to work with people aged over 50. 

Helen Vernon

During the visit I was given information about a number of projects that I was not aware of, for example a clothing bank run by Macmillan that provides ten items of clothing for people who had experienced weight loss or gain.  This is such a useful resource and I am sure I will be referring to them in the future.

The Information Centre in the north of our borough sits outside of the hospital and so potentially the referral stream from CNS to Macmillan is different.  Therefore we will continue to speak with the CNS in this area.

Helen Vernon, SPAC

A day out with MISS Betty – the Macmillan Information Support Service Bus

Back in January 2015 Anna Jones from Macmillan Cancer Support invited us to join her team on MISS Betty – the Macmillan Information Support Service Bus in Victoria Square, Birmingham City Centre.

Although SCOPA is based in Sandwell we are aware that many Sandwell residents visit the city of Birmingham with their families – especially during February half term week, so we accepted their offer and Paddy Elmore and Juanita Williams joined Jez, Karima and Caroline on the afternoon of Tuesday 17^th February.

The mobile centre tours the UK, visiting high streets, communities and events to bring free, confidential information and support.

Juanita on MISS Betty

You don’t need an appointment to speak to the cancer information specialists. And you’re welcome whether you have a cancer diagnosis, are worried about cancer or are visiting on behalf of a friend or relative.

The bus was parked up by the Council House, Town Hall and Birmingham Museum and Art Gallery, over looked by a statue of Queen Victoria and the Floozy in the Jacuzzi!

It was a cold, blustery afternoon but we were greeted by the Macmillan staff with a lovely hot cup of coffee and a smile.  Emily Davidson, the Birmingham Macmillan Fundraising Manager was also on board sharing information.

Juanita and Paddy

The bus offers clinical, financial, emotional and practical support information from professionals working in the cancer field.  Promoting local services is very important to the staff so we took along some of our leaflets and business cards for members of the public. The bus has information on virtually everything you could ask for if you have a question about living with cancer from clinical information to the benefits of gardening and how to cook healthy meals.  It’s amazing how many questions people have and nothing is too much trouble for the staff. Sometimes people come on board to share their stories, donate some money or just thank Macmillan for the support they gave to loved ones.

There’s a small cubicle on board where people can have a chat in private with any of the staff and volunteers.  It’s a really inviting and friendly set up. People just walk in with all sorts of questions and enquiries.  We have met the staff before when they visited Sandwell last year so they are fully aware of the service SCOPA offers.

We hope to join the team again when they are next in the area and hopefully we will have more of our own leaflets to hand out………….. and maybe, just maybe the sun will be shining and it will be a bit warmer …………. You never know!

Juanita Williams, Volunteer co-ordinator, Sandwell Cancer, Older People and Advocacy

We’ve been listening to the Reith Lectures this year, have you?

Here at Dorset Macmillan Advocacy we’ve been listening to the 2014 series of Reith Lectures on BBC Radio, this year delivered by surgeon and Harvard Professor Dr. Atul Gawande. Gawande is a well known author and was named as one of the world’s most influential thinkers by Time magazine in 2010.

As a cancer advocacy service we experience all aspects of our local cancer services and with the massive Dorset CCG Clinical Services Review underway we are all interested in thinking about how systemic changes could benefit patients and clinicians alike.

 

 

 

 

In the first lecture Dr Gawande describes the central act of medicine as, “the moment when one human being turns to another human being for help”. He reflects on what he sees as the underlying flaw in modern medicine: a failure to effectively and consistently apply the knowledge science has afforded us over the last century to achieve the best outcomes. The scope and depth of the knowledge we now possess, he argues, goes beyond anything implementable by any one individual hence the need for updated systems to enhance communication and delivery of services.

In his second lecture Gawande highlights the need for effective systems to underpin delivery of the best possible treatments. The premise is relatively simple: does everyone involved in the treatment process know their role – have all the bases been covered and has this been verified?

Gawande and his team have pioneered a checklist approach looking to fields outside of medicine for inspiration. So far this has yielded impressive results saving lives and reducing complications during surgery where trialled.

Dr Atul Gawande

This is an approach that he believes could apply to complex, long term conditions where patients often have more than one problem requiring treatment and could potentially not only improve patient experience and outcomes but also (and importantly) save money.

The experience for many older people affected by cancer is busy and complex with multiple individuals and agencies involved. Gawande argues that with this level of complexity the opportunity for oversight and errors is greatly increased unless there is a solid system in place to co-ordinate the treatment process. He draws on powerful personal stories to illustrate his point: he counted a grand total of 66 people attending to his own mother in her hospital bed during admission for a knee replacement, some of whom gave conflicting advice as a result of operating within their own, isolated remits.

The situations and dilemmas outlined in Gawande’s lectures highlight the role that advocacy can play to great effect in the cancer journey – when a person is at their most vulnerable and difficult choices have to be made and complex treatments and procedures understood and implemented, having an advocate can be key.

Jenny Rimmer, Senior Macmillan Advocate, Dorset Macmillan Advocacy

 

This kind of service is sorely needed…

My name is Juliet Hammonds and I have worked in Information and Advice at Age UK Bristol for the past three years. I began work here as an advocate for people with care home related issues and have studied for and achieved a City and Guilds in Independent Advocacy while providing that service.

When the funding for that post came to an end I started working for Age UK in a split role as a Dementia Welfare Benefits Adviser and a Cancer Advocate. There is a lot of overlap between these roles, with many clients having both dementia and cancer, or I might see a couple where one is affected by one and the other one is affected by the other. I can often offer clients in these circumstances greater continuity of a service without needing to refer them or signpost them elsewhere.

Juliet Hammonds

Since starting this post in May I have been working with approximately twenty clients on a variety of issues. These issues have included attending best interest meetings and writing best interest letters, providing information about benefit entitlements, helping to sort paperwork following a death, helping people apply for supported housing when conventional housing is becoming too difficult to manage, getting help and support for carers, as well as lots of listening, general support, and signposting.

The post has had its challenges; accompanying a client with learning difficulties to a consultation meeting regarding their cancer diagnosis was a new test for me, but helping the client to understand complex information and helping them to express themselves in relation to their health situation was clearly of huge benefit to the client. It is also challenging to work with people who have had a terminal diagnosis, although it is good to see the benefits good information and a listening ear can offer people in that situation. This kind of service is sorely needed for older people in Bristol and I’m looking forward to helping to build the project over the next few years.

 

Juliet Hammonds, Age UK Bristol, Cancer Older People & Advocacy project