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.

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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

I became a peer advocate because having had cancer, I felt that I could be of help to other people.

Deb McGarrity, delivery partner AgeUK Northumberland’s paid advocate, gives us an insight into what it’s been like delivering the older people’s cancer advocacy service in Northumberland recently. In what is Volunteers Week, Deb also introduces us to Marion, an older person affected by cancer, who has become a peer volunteer advocate:

Since the end of last year the Age UK Northumberland Macmillan Cancer Advocacy and Older People project has steadily been receiving referrals, there have been 24 cases since December 2015.

Without a volunteer coordinator it has been a challenge to keep our volunteers engaged and supported, this has partly been achieved through a good relationship with local Macmillan who opened up their volunteer training schedule to our volunteers. Our volunteers have taken advantage of the Macmillan training by participating in training in Bereavement and Loss, Specialist Palliative Care, Cognitive Behavioural Therapy and Prostate Cancer.

Volunteers have also accompanied the paid advocate on visits and are slowly beginning to have their own cases. One volunteer, Marion Young has started working with a client who recently was given a terminal diagnosis. When I asked  how she feels about being part of the project, Marion responded by saying:

“I became a peer advocate because having had cancer, I felt that I could be of help to other people. I am looking after my first client who has been given a terminal diagnosis. With the guidance of Deborah and the client’s permission I have written letters to the GP and Macmillan to support her with her request to be able to move nearer to her daughter. I am going with her to the hospice. I am meeting with her beforehand to note any questions that she has, giving her empowerment that enables her to understand what will happen.”

Marion Young

From my own point of view it has been great being able to include the volunteers in client case work. Not only are we utilising their experience to help our clients but I too am learning from them which is extending my expertise and informing my practice. I can see too that the clients also really appreciate having someone to support them who has also been affected by cancer.

Deborah McGarrity, AgeUK Northuberland

“this empowered her to then make the next step on her own…”

In today’s post John, one of our dedicated peer advocates tell us his story:

I came to volunteering following my retirement. I wanted to use some of the skills I had acquired during my working life in hospitals and my own personal experience of cancer to support others.

As a volunteer advocate for Age Connects Cancer and Older People Advocacy project, I provide non-judgemental support ensuring that the older people’s views and wishes are represented. As a volunteer advocate I ensure there is a better understanding of the clients’ needs, and follow instruction solely from my client; confidentiality and trust is key to this role.

One call was to support a lady with her decision about moving. I went to visit her at home and found she lived in a top floor flat with no lift. She had difficulty walking so was finding herself increasingly staying at home and going out less as she couldn’t face the thought of struggling with all the stairs.

She asked if we could gain some information from her Housing Association, so with her consent they were contacted and the information was obtained on her behalf.  This information was discussed when I met with her face to face and we chatted at length about her possible options. She liked living in a flat as it was small and manageable. She also liked living on a higher level as she felt safe. However, she understood that with no lift and an impending operation which would incapacitate her even further, life in her top floor flat was going to become even more isolated and difficult. We talked further about the possibility of improvements she may find in her daily life if she moved to a property that had access to a lift and following this she felt more confident to phone the housing association to discuss her options and take it further. Having someone to talk to was vital for this lady, she had limited family and initially she didn’t know how to start the process of enquiry about moving, or even whether it was a viable option. Having spent time with her talking this through, I feel this empowered her to then make the next step on her own.

Another call was to visit a lady in Llandough Hospital. She had battled hard against her cancer and was now receiving end of life care in hospital. There was an absence of relatives so she was pleased to see a visitor. I had previously assisted her with some paperwork when she was at home, so it was nice to see her again, albeit in sad circumstances. I sat with her, held her hand and waited to see if she wanted to talk. When someone’s very unwell they may not want to listen to a chatterbox! Just being there and holding hands can help a person feel better.

She said she had declined physiotherapy because she was frightened in case she should fall. I spoke with the ward nurse and voiced the clients concerns – we arranged that the physiotherapy would start again.   I enquired about my clients care as there had been some queries about a move to another hospital, at that point in time she was too poorly for a move to take place and going home was not an option as there was no one to take care of her.  The process of what was currently happening was explained to my client and she understood why these decisions had been made. I made arrangements to visit again the following week, but very sadly my client passed away.

Through my volunteering work I support older people who have been touched by cancer with a range of issues, and hope to continue to do so. I can’t help with everything but I do my best. I make the extra effort to give my time and listen – I always listen.

John, peer advocate, Age Connects Cardiff & the Vale

Living in Cardiff and the Vale? If you or someone you know over the age of 50 is affected by cancer and could benefit from our service, please get in touch to discuss how a volunteer advocate could help you.

Call 029 2068 3681 or email copa@ageconnectscardiff.org.uk

 

 

“everyone my client met treated her with dignity and respect”

Susan, one of our volunteer advocates, gives us a moving account of supporting one older person affected by cancer:

I am a volunteer advocate from Getting Heard (formerly Oxfordshire Advocacy) and a Cancer Older People and Advocacy volunteer, and one of my partnerships had significant interactions with the multi-disciplinary and multi-professional team. At each interaction, I as the advocate, was made very welcome and at no time did my client or I feel rushed, intimidated or feel that my client’s views were not taken into account. My client was involved in all decisions and staff took her views and concerns very seriously when developing her management plan, and she and I recognised that this was holistic patient centred care. Interactions with professionals and all other staff was extremely positive, medical and nursing staff welcomed the advocate when the role and responsibilities were explained, recognising the emotional and practical support available for the patient.

Susan

The specialist nurse made the initial referral as she was aware that my client lacked support attending consultations. I supported my client when she attended the gynaecology outpatients department for her first consultation with the surgeon following a diagnosis of uterine cancer. My client was determined that she was not going to undergo chemotherapy and my role was to support her achieve her wishes. Both the surgeon and specialist nurse listened to my client and when I intervened to clarify what was being said and questioned whether she understood the impact of her decisions, both clinicians were supportive of my client’s wishes.    

I supported my client pre-operatively and interacted with the nursing and support staff. At the post-operative consultation following keyhole surgery, she was seen by the consultant gynaecologist when she was informed that the cancer was invasive and they had been unable to remove it completely. My role was to support my client reiterate to the consultant that she did not want chemotherapy but agreed to have radiotherapy.

By her first oncology consultation my client’s physical condition had deteriorated and she had developed further symptoms, and the oncologist decided that she should have more investigations including a CT scan. By the second oncology consultation CT scan results indicated further spread, and the plan was for four sessions of palliative radiotherapy. My client asked me to attend a meeting at home with the hospice specialist nurse for moral support, at the meeting the specialist nurse discussed hospice support and pain management. I attended her first two radiotherapy sessions, however by the 2^nd session she had increasing pain and discomfort, weakness, urinary and bowel symptoms. By attending the radiology department, I was able to give physical and emotional support and assisted my client discuss her concerns with the radiographers.

My client fell at home and was admitted to the local hospital where I visited her in A&E and on the ward, where I met kind and caring staff. She was too unwell to be transferred to the hospice and died soon after following a stroke.

I was so glad to support my client during her various medical interventions both at hospital and at home, in order to support her through her cancer experience. I was able to offer support, and help her navigate the system and help her ask those often difficult questions and understand the response from professionals. It was a privilege to meet so many kind and compassionate members of the multi-disciplinary team, everyone my client met treated her with dignity and respect and nothing was too much bother. Feedback from professionals regarding the experience of working with an advocate was always positive and it was recognised that a well-informed and well-supported and empowered patient facilitated a positive staff : patient relationship. It was also recognised that the advocate had the time to support their client when professional staff had limited time and that support was consistent and flexible.  

Susan Mackie Volunteer Advocate, Getting Heard (formerly Oxfordshire Advocacy)

Cancer – Not Beyond Us: World Cancer Day is February 4th 2015

4th February is World Cancer Day.

Taking place under the tagline Cancer – Not beyond us, World Cancer Day 2015 will take a positive and proactive approach to the fight against cancer, highlighting that solutions do exist across the continuum of cancer care, and that they are within our reach. The campaign will explore how we can implement what we already know in the areas of prevention, early detection, treatment and care, and in turn, open up to the exciting prospect that we can impact the global cancer burden – for the better. By moving forward together we have the potential to prove: Cancer. It is not beyond us.

This year’s campaign focuses on 4 key areas:

• Choosing Healthy Lives: Reducing the social and environmental risk factors for cancer and empowering people to make healthy choices, are key components to achieving the global overarching goal of reducing premature deaths from cancer by 25% by 2025 and reaching the aspirational targets of the World Cancer Declaration.
• Delivering Early Detection: Ensuring the availability of, and access to, early detection programmes for cancer can significantly reduce the cancer burden in all countries.
• Achieving Treatment For All: All people have the right to access quality, effective cancer treatment and services on equal terms, regardless of geography and without suffering economic hardship as a consequence.
• Maximising Quality Of Life: Understanding and responding to the full impact of cancer on emotional, mental and physical wellbeing will maximise the quality of life for patients, their families and carers.

Those of us involved with the Cancer, Older People and Advocacy programme are especially focused on these last two areas.

Achieving Treatment For All: We’re working to ensure equal access to treatment options and for the right of the older person affected by cancer to choose what’s best for them from an informed position.

Maximising Quality Of Life: the campaign calls for the empowerment of individuals to maximise their quality of life. Amongst a number of challenges the campaign cites the following –  Cancer can have a serious impact on a person’s emotional, physical and mental states and cancer survivors are at risk of diminished quality of life up to several years after diagnosis;  The psychological toll of caring for a person living with cancer can also be enormous, with many carers experiencing distress and declines in their physical and mental health; Cancer pain experienced as a result of inadequate access to pain medicines has vast implications for the quality of life of cancer patients and is often linked to psychological distress, including higher levels of depression, anxiety, and fear.

The advocacy support we provide helps combat these issues and it’s why our peer advocates train to support others like themselves who are affected by cancer.

Support World Cancer Day in whatever way you can. You can find more information on the website which can be accessed here

Marie McWilliams, OPAAL

December 10th is Human Rights Day

OPAAL has signed up to a Human Rights Day letter from civil society groups. Providing an opportunity for groups to join together and speak up for the importance of human rights laws for us all, this sits well with OPAAL’s commitment to advocacy and thereby to empowerment and to ensuring that the voices of older people are heard.

The letter states:

Sixty-five years since the adoption of the Universal Declaration of Human Right (UDHR), we ask political leaders to acknowledge the continued relevance of human rights both on the global stage and here at home. As leaders of civil society groups we see the vital role of human rights in ensuring a fair and healthy democracy, and helping us all to live with dignity and respect. Yet we are concerned that the value of human rights, which so many across the world look to for inspiration in setting down domestic laws, rarely feature in the current Westminster rhetoric.

 

This Human Rights Day, we ask political leaders to ensure that recent commitments at the United Nations Council to ‘work tirelessly for the promotion and protection of human rights, both domestically and abroad’ are made a reality. We hope that the UK will stand firm on the European Convention on Human Rights and our Human Rights Act, both inspired by the UDHR and providing vital protections to us all here at home. There is much to do to ensure these human rights have meaning for all people in the UK; our political debates should focus on making this happen rather than taking us away from the universal human rights standards long-championed by the UK.

We hope that those in positions of responsibility are able to support human rights for everyone. It’s time for the recent lambasting of the Human Rights Act here in the UK to end and a more considered approach to be taken.