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 11^th  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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Often patients have no-one or family are too closely involved and frightened themselves..

Many thanks to Sue from Knowsley Pensioners Advocacy Information Service (KPAIS) for today’s very personal account of a cancer diagnosis:

When I started work, as Administrator on our Cancer, Older People And Advocacy project in 2014, never did I imagine I could end as a possible service user!

In April last year, after a routine mammogram, I was diagnosed with breast cancer.  To say your world turns upside down is an understatement!  A lumpectomy and course of radiotherapy followed fairly quickly afterwards.

Sue

Immediately, after the diagnosis, I actually felt a sense of relief. During that interim period, your imagination plays havoc with you and you imagine all sorts of horrid possibilities.  But apart from them saying ‘we got it all wrong Sue’, the prognosis I received was most likely the best I could have hoped for. However, my partner was devastated – he’d lost his wife to breast cancer many years ago. But he came up trumps and became my ‘brick’ throughout my journey.

I had a supportive partner and family around me – someone to confide my fears in and to accompany me to the many hospital appointments but it made me realise the importance of the Cancer, Older People And Advocacy project, having someone there just for you, to speak up for you, sort things out for you, to talk to when you’re frightened, listen to what the professionals are saying.  Often patients have no-one or family are too closely involved and frightened themselves. An independent Advocate can make all the difference.

Sue, KPAIS

A day in the life of……..a peer volunteer advocate

Our thanks to Jill Wallace, who is a peer volunteer advocate with programme partner Advocacy in Barnet, for the following enlightening blog post:

So irritating, I have woken up so early as usual; the habit of waking as if I am going to work never seems to stop.  Priority is to feed my cat Izzie and have my first of many cups of tea and read my book before the newspaper is delivered.

Jill

There is an advocacy support meeting today which I am looking forward to as there will be quite a few new volunteers attending. I think it is such a great opportunity for the new volunteers to meet other advocates and have the opportunity to listen to the variety of work we carry out. We have a speaker at each monthly meeting and try to book other organisations working in Barnet; the information can be so useful to people that turn to Advocacy in Barnet (AiB) for support.

Very interesting support meeting ; it was very rewarding chatting to the new volunteers during our coffee break to hear that they felt relieved and happy at the level of support available to them at all times.  Today’s speaker will be of great interest to some of our clients; a family business that can offer bespoke meals delivered as and when required at a very reasonable price.

I have arranged an initial visit accompanied by Georgia, a trainee Social Worker working with AiB as part of her training. As the meeting was from 10 – 12 am we have plenty of time for a nice lunch and chat together before our visit at 2pm at Finchley Memorial Hospital. So far I am really enjoying my day! Spent lunch with Georgia discussing how much she had enjoyed and learned from working with AiB. Hearing how this had helped her as she was coming to the end of her training was very enlightening.

We visited our client Mrs A, age 90, at Finchley Memorial Hospital.  After explaining the support AiB could offer, and obtaining signed authority to act on her behalf, Mrs A spoke of the concerns she had regarding where she would live once discharged from hospital as she was aware that she was physically unable to live independently. Happily we were able to point out that Mrs A did have choices and advocacy would be happy to liaise with all the professionals involved to ensure that her opinions and decisions are listened to.  We discussed with Mrs. A the action we would be taking on her behalf to ensure they met with her approval.

Georgia had taken notes during the meeting which ended at 3.15pm; we spent 15 minutes discussing Mrs  A’s case.

Arrived home just after 4pm having had a very varied day, bit tired but pleased.

Jill Wallace, peer volunteer advocate, Advocacy in Barnet

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

Friendships forged through advocacy

In today’s post, Valerie McGregor advocate at delivery partner Knowsley Pensioners’ Advocacy Information Service (KPAIS) ponders the relationships we build whilst delivering advocacy support:

Having recently revisited some of the cases of older people affected by cancer who received support through advocacy, it became apparent that not only did we have a professional relationship as advocate and client whilst dealing with their issues, but also that during their journey we had become friends.

What I didn’t envisage was that through supporting them, I would get to know them so well. In so many cases I’ve learned about their lives from an early age, where they grew up and all about their families. I love to hear about and feel privileged to hear their stories, and how their cancer journey has affected them and their loved ones. 

Valerie McGregor

 

I have found that as an advocate, and especially whilst dealing with older people affected by cancer, it becomes apparent that very often, the client will minimise their issue and I hear them say they they feel there is someone else more in need of this service.  The joy of this service is that we do have the time to spend in getting to know people, and giving them as much time as they need to identify the areas they would most benefit from some help. In this getting to know each other period, it really can begin to feel like chatting with old friends.

 

It’s always good to hear positive feedback about the Cancer, Older People and Advocacy project and the service it provides, but it’s also good to know that having an advocate has been so helpful, that we are now regarded as friends.  It’s clear that being there to listen or to talk things through can make such a big difference.

So many of the people who have accessed this service have said that they feel they have a friend for life which I find so humbling that I have been able to make such a positive impact.

Valerie McGregor KPAIS

In your shoes

Helen from Sefton Pensioners’ Advocacy Centre tells us about a recent event she went to.

I attended an event organised by the local hospital trust in conjunction with Macmillan called ‘In Your Shoes’.  Advertisements had been placed in the local press and online inviting patients, former patients and carers to attend.  Pre-registration had been encouraged as the format of the day was for primary and secondary care staff to listen to each patients experience on a one to one basis and record the positive and negative aspects of their care.  The staff who attended were predominantly not dressed in uniform, had not been involved in the individual’s care and were from a range of disciplines.

Following the one to one discussion the listeners then read out the positive and negative comments.  There were many positive comments about the individual communication from all members of the multi-disciplinary team.  However there was criticism about the inconsistency within the service between oncology and the general hospital.  Many people had experienced problems with their GP not being kept up-to-date with the treatment and the patients or their carer’s were unsure where to seek the appropriate medical help.  There was a suggestion that there should be an individual who could coordinate all the treatment and be a point of liaison or alternatively that patients could be issued with hand held notes to avoid the need to repeat their medical history.  Another carer felt that a letter from the GP explaining the full situation would have improved their journey through A and E.

Helen Vernon, Sefton Pensioners’ Advocacy Centre

There was a general agreement that there was a marked difference between the regional cancer hospital and the local hospital.  The older patients felt that they had had a significantly inferior experience on the general wards where staff were more likely to be rushed, have a more negative attitude with regard to prognosis and treatment options and display less empathy.  This became one of the most significant outcomes of the listening event and the organisers intend to take this information back to the hospital board for consideration.

Those present felt that the disjointed care continued when they left hospital and that there was a lack of awareness of the correct protocols for care by the district nurses.

There were several comments made which were particularly relevant to the advocacy project.

• Some attendees felt that there was very limited or no information about benefits, local support or other services in the area
• Alternatively others were given this information but not at an early stage
• On a number of occasions the diagnosis was given to the patient whilst they were on their own
• One individual mentioned that they felt that patient’s decisions about treatment should be respected and that they should not frequently be asked if they wanted to change their mind
• Treatment options on the elderly care ward were limited as it was felt that the staff were dismissing them because they had a cancer diagnosis

A local Macmillan Involvement Officer attended the event to coordinate feedback and she spoke to the larger group about our Cancer, Older People and Advocacy project.  She was able to link a number of the points highlighted back to our cancer advocacy service which was helpful and positive.

Helen Vernon, Advocate, Sefton Pensioners’ Advocacy Centre

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

Macmillan Cancer Voices Conference

Kathleen Gillett from Dorset Cancer Advocacy and I were at Macmillan’s Cancer Voices Conference over the weekend. Cancer Voices is the name Macmillan gives to the many people affected by cancer who become involved with Macmillan in giving something back; they’re trying to improve cancer care for others.

Kathleen and I presented a couple of workshops on Saturday morning, telling people about the Cancer, Older People and Advocacy project and were delighted with the response we got. Those who’ve been affected by cancer themselves totally “get it”; they understand why having an advocate can make such a difference. For us though it was as much about listening to the personal experiences of those we met and learning from them. We were humbled and inspired by those we talked to and we’d like to extend a very warm welcome to all of our new blog followers who signed up during the workshops.

As we approach the next stage in what has been until now a pilot project and seek to expand the provision of independent advocacy for older people affected by cancer and recruit more peer advocates we need to ensure we’re listening to the voices that matter most. Our future plans include making short films of real life stories which we hope will have the impact that us just talking about our work can never have.  We’re especially keen to show these films to health professionals to encourage them to refer to our cancer advocacy services and to the new Clinical Commissioning Groups to encourage them to support local cancer advocacy provision in the best way possible, with the colour of their money.

Wish us luck!

Marie McWilliams, OPAAL