We celebrated the World’s Biggest Coffee Morning in Sandwell

The World’s Biggest Coffee Morning is Macmillan Cancer Support’s annual flagship fundraiser and celebrated its 25th birthday on Friday 25th September. Here, Juanita Williams tells us about getting involved this year:

On the morning of Friday 25^th September  we at Sandwell Cancer, Older People and Advocacy project (SCOPA) hosted The World’s Biggest Coffee Morning at Sandwell Irish Community Centre in Langley Lodge, Langley.

The Worshipful the Mayor Cllr. Barbara Price arrived promptly at 10.00am together with the Deputy Mayor Cllr. Julie Webb. In my role as SCOPA volunteer coordinator, I welcomed them to the event and introduced them to Project Manager, Dave Bradshaw and Chairperson, Lesley Donnelly.

They spent time talking to the SCOPA staff about the project before settling down for a cup of tea and piece of homemade cake.

The event was supported by SCOPA staff, SCOPA Local Cancer Champions and SCOPA volunteers who were all on hand baking cakes, selling refreshments and generally making everyone welcome.  We had lots of information available to share with members of the public about the work we are doing at SCOPA and twelve months into the project we have experience of what exactly the needs are of the people who use our service and how volunteering can make a huge difference to their lives.  Two volunteers Sherry and Andy were all on hand to talk about their own experiences.

Paddy Elmore Advocate, Deputy Mayor, Cllr Mrs Julie Webb, The worshipful the Mayor of Sandwell, Cllr Mrs Barbara Price, Juanita Williams Vol co-ord, Dave Bradshaw Project Manager, Lesley Donnelly – Chair of Sandwell Advocacy

I have been hosting The World’s Biggest Coffee Morning for nine years now and I was keen for everyone to be recognised for their time and effort. This included a group of dedicated volunteers and my own mum, Cath Mansell, who has been baking, making and selling cakes and craft items to raise money since 2005 when Macmillan Nurses supported the family during my dad’s cancer journey.

Sandwell Irish Community Association have been supporting Sandwell Advocacy and Macmillan Cancer Support for many years and this annual event is very well attended by the local residents of the village and farther afield.  It’s a lovely relaxed way to spend time with people, chatting over a cup of tea about our work, often they share their own stories with us.

SCOPA Project Manager, Dave Bradshaw was keen to host this event again, twelve months after the SCOPA launch. He commented “This is the second event in a row that we have supported and I am delighted to have done so again.  It is interesting to note how far the SCOPA project has come since last year’s event and extremely encouraging to witness the levels of support provided to older people affected by cancer by both project staff and volunteer advocates.  It is events such as this that underline the importance of integrated support services for people affected by cancer and their families, as well as the important role people can have as volunteers in supporting others through their cancer journeys.”

Juanita Williams, Sandwell Advocacy

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Supporting Maria: Neil’s story

In this blog Neil Topping, a volunteer advocate for Oxfordshire Advocacy tells us about his support of Maria (not her real name)

BACKGROUND

My advocacy partnership with Maria, a nursing home resident began in March of this year after a referral from Social Services. Maria, a Portuguese citizen, had been diagnosed with terminal bone marrow cancer and had a life expectancy of 12 months. Some years ago, she had also been diagnosed with schizophrenia.

THE PARTNERSHIP

The partnership agreement centred upon providing support to Maria in accessing her Portuguese bank account, assisting her in managing her account on line, helping her to understand her care cost liability and reconciling her budget and providing information for her to decide on whether to sell or rent her property.  From the outset, Maria accepted that her illness was terminal and she would not be returning to her flat.

In mid-June, I attended a meeting at the nursing home where Maria decided to sell rather than rent her property and the social worker confirmed that the Council Money Management team could handle the sale. It was also agreed that she would bring a representative of Money Management to the next meeting with Maria. I agreed with her that I would also attend this meeting and that provided that she was satisfied with the arrangements being made, the advocacy partnership would conclude.

Neil Topping

 

THE OUTCOME

Shortly after I returned from my holiday, I was contacted by the nursing home manager to be advised that Maria had just died. She asked me for any information that I could provide to assist her with the funeral arrangements and in a few days we were able to piece together some details of her life and some idea of her wishes as she hadn’t made a will. I concluded the partnership having satisfied myself that the nursing home would organise the funeral and that Money Management would deal with the estate and financial matters generally.

 

CONCLUSION

The partnership was made easier because Maria understood the severity of her illness and wanted to deal with the implications. This, of course, is not always the case with those who are terminally ill. However, I learnt at an early stage that we had to let Maria control the pace of her decision making process and let her take time to understand her options. I also learnt that afternoon meetings seemed to suit her best. It may have been due to her  schizophrenia, but it took a little time for me to gain her trust. Therefore, throughout the course of our meetings, both the social worker and I asked her if she was ‘happy with the way things were going’ and how we were supporting her.

In future cases, I would check at an early stage whether or not the care/nursing home, has clear information on file regarding the clients wishes following his or her death. With cancer, life expectancy projections are difficult to get right. Those of us supporting Maria were attempting to deal with the issues facing her in a way that was sensitive and recognised her prognosis but, as it turned out, was unrealistic in terms of the time that was left to her.

by Neil Topping – Oxfordshire Advocacy Volunteer Advocate

Our team may be SMALL but the difference we make to people’s lives has a BIG impact

Laura Thomas and Sue Campbell of Age Connects Cardiff tell us about their tight knit team:

In the first months of starting the project our priority was to promote the service and to recruit our vital peer volunteer support advocates.  We have worked hard to promote the project across Cardiff and the Vale, including participating in a variety of road shows which proved to be successful.

This success has been matched by the number of referrals we have received with the project already supporting 47 individuals. Our peer volunteer support advocates are matched with those people needing support and quickly start making a real difference.   As one of our clients said

“I am so pleased I made that call, I no longer feel I am facing this horrid disease on my own.”

Peer volunteer support advocates support people with a range of activities from:

• providing emotional support in their own homes
• being available at the end of a phone
• helping them to attend various hospital appointments
• visiting them whilst they have been in hospital,

Our dedicated Volunteers have experience of cancer in some form or another and come from a range of backgrounds, each of them bringing a wealth of skills, knowledge and experience.

Volunteer training

We continue to build good working relationships with other cancer services, especially Macmillan, who have recently added us to their web page with a link to Age Connects Cancer, Older People and Advocacy web site, and Tenovus cancer care continues to share information with us and provide training opportunities for our volunteers.

Volunteer Coordinator, Alice Matthews

Our team is small and is made up of 4 active Peer volunteer support advocates , 1 paid advocate and 1 paid volunteer co-ordinator both whom work 14 hours each per week. We also have 7 hours of administration and 5 hours of managerial support. This equates to only 1 full time paid member of staff which highlights how much this project relies on the dedication, experience and good work of our brilliant Peer volunteer support advocates.

Our team may be SMALL but the difference we make to people’s lives has a BIG impact.

 

The negative spiral of ‘just coping’

Jen Rimmer tells us about Dorset Macmillan Advocacy’s additional focus on carers of older people affected by cancer:

Supporting carers has become an integral part of the Dorset Macmillan Advocacy Project and we have secured funding from the local Clinical Commissioning Group to do just that. As a result of this we have been able to welcome experienced advocate Pauline Godwin to the team.

What we are often finding when we meet a carer referred to the service is that even if the older person affected by cancer themselves is coping well with the support mechanisms that are in place for them, the carer may be struggling.

 

Finding yourself in the caring role can be a sudden and unexpected change in circumstances and along with the shift this may cause in a relationship, there are inevitably practical issues that demand attention. Navigating your way through unfamiliar territory can be daunting at the best of times but when you are tired and emotionally affected by what is happening, the task can seem unmanageable. Carers and their cared for person are often caught in a negative spiral of ‘just coping’ and not having the time or energy to understand what help and support may be available for them.

Pauline Goodwin

Gwyneth Brooks the Carers caseworker at Dorset County Hospital came to meet Dorset Macmillan Advocacy volunteers in June and deliver some training on supporting carers in Dorset.

Gwyneth highlighted that the framework for carer’s assessments has recently changed with the implementation of the Care Act to a nationally standardised system and Social Services now have a duty of care to inform carers of services available to them. Locally, we are fortunate that Dorset County Council have opted not to charge carers for the services available to them. Examples of carer’s services include a sitting service and the short break service.

Previously the assessment of carers was based upon the number of hours a person was caring per week. Under the new system a carer is assessed according to the impact the caring role has upon their lives.  This means that the eligibility criteria is now lower (i.e. a grown up child living apart from their parent but having a caring role will be more likely to be eligible now) but the impact must be evidenced.

This is achieved using the Carer’s Assessment form which can be filled out by a health or social care professional or the carer can fill it out themselves. There is clearly an opportunity for us as advocates to help the carer complete this assessment in in the manner which will best reflect their needs and experience. The rationale behind the new form is that the assessment is based on finding solutions to an individual carer’s needs rather than simply allocating services. Carers should also be registered with their GP as such to ensure they receive the help and support they need for their own health needs.

We are engaging with carers regularly as part of the advocacy support for individuals but we are pleased to be able to offer a service that carers can access directly themselves.

Jen Rimmer, Dorset Macmillan Advocacy

Rosie’s thoughts on the cancellation of her Ablation operation

I am Rosie Young, retired nurse and Cancer Champ for Oxfordshire Advocacy and I have blogged before about my experiences as a patient living with lung cancer.

I just want to share the shock I felt when the consultant phoned to say my Ablation had been cancelled.    It was almost like a mega bereavement process, having been so ‘psyched up’ for this operation.   I felt cheated in an odd way.    In April there was the shock of the cancer coming back and then the long wait for the first operation date finally set in late June which was then postponed due to lack of hospital beds.   And then the wait for a new date in August.   And now the second cancellation and another 3 month wait as it seems that the area they were worried about in my lung has shrunk, my next scan will be in late October.

Rosie

It’s a very strange emotional upheaval to go through.    Everybody is incredibly happy that the possible tumour has shrunk and can’t understand why I am not over the moon. I have had to pretend that I am happy too.   I have been feeling so guilty and conflicted, not wanting to burst the bubble, even with my advocate Linda.   I didn’t expect to feel like that.

I guess I’d like every advocate out there to be really aware of the emotional roller coaster a patient goes through when there is a cancellation of an operation or change to planned treatment.   When this happens you feel like you’ve lost control cos you can’t do anything practical to help yourself.   Really listen carefully and do not make any assumptions or have expectations when this happens.

It seems to me from all the research I have done that no one has really got to grips with the psychological impact of cancer both on you and others around you who are in some ways more frightened than you.

 

Rosie Young, 26.08.15

Advocates in Integrated Care: making a difference..

Sam Bond, Service Manager at The Macmillan Impetus Cancer Advocacy Service in Brighton & Hove, explains why advocacy can make a real difference

“The use of health and social care by people with cancer” a 2014 study commissioned by The Department of Health, shows a clear link between cancer diagnosis and use of social care.  The report explains “For some social care is critical to their independence and ability to participate in society.”  However, use of social care by people with cancer is not equivalent to use of social care by people with other chronic conditions. A report by Macmillan in 2010 ‘Cancer should be as much a social concern as it is a health priority’, found that statutory social care was not meeting the needs of people with cancer. ‘People were often not referred for an assessment and did not know about the types of services which may be available. The research also found that those who commissioned social care services had limited understanding of the specific needs of people affected by cancer.

However, recent updates to legislation aim to transform the delivery of health and social care. The Care Act now places a duty on local authorities to work more closely with health services in order to promote the wellbeing of adults and improve the quality of care they receive. The Care Act espouses core values of ‘wellbeing’ alongside ‘whole person’ care, promoting independence. It extends the right for eligible people to access independent advocacy so that they can be involved in social care assessment and safeguarding processes. But what about advocacy support for people to be involved in integrated health and social care processes? What will ‘whole person’ care look like for people affected by cancer? My understanding is that it must be based on the needs of the individual and their particular circumstances.

Cancer advocacy services, born of a collaboration between Macmillan Cancer Support and The Older People’s Advocacy Alliance, are responsive to people affected by cancer and their individual circumstances. The trained advocates, professional advocates and peer advocates with their own experiences of cancer, have time to build a relationship of trust with the client, listening and finding out what’s important to that individual (‘the whole person’).

When I started my role as Service Manager at The Macmillan Impetus Cancer Advocacy Service in Brighton & Hove, I had some concerns that health and social care professionals might view advocates warily. However, my experience so far, is that health and social care professionals welcome the opportunity to have the involvement of an advocate to support their clients.

Sam Bond

I found a recent conversation with a health professional quite revealing on this matter. He told me that the hospital where he worked had had an experience where some paid carers accompanying clients to appointments sometimes behaved in an adversarial and accusing manner towards health professionals. He said he had found that particular carers sometimes had their own agendas when they accompanied patients to appointments. This caused the health workers felt defensive and sadly the patient’s wishes were getting lost in the middle of all of this.

Having worked as a paid carer myself for a number of years, it is not my view that paid carers generally act in an accusing way. However, this example does emphasise the value of properly trained advocates.  An advocate’s only concern is to represent the wishes of the person instructing them. Advocacy is certainly NOT about accompanying a client to an appointment equipped with a detective’s notebook and a suspicious frown! Of course advocates can and must raise concerns regarding the quality of care if clients wish them to. But this is just a fraction of what advocates do.

An advocate can extend the support that health and social care professionals are able to offer. For example, Cancer Advocates can provide support by helping people to prepare questions for appointments in order that the person can make the best use of time with a clinician, as well as attending alongside the person. Advocates can ensure the person understands, gathering information and explaining information that might not be clear or requesting clarification. They can write information down for the person, and/or talk through the information again later on. Advocates do not give advice but help ensure clients can access information and consider its implications in relation to their particular circumstances, so that they are able to make informed choices. The benefit of Advocacy is that the advocate is instructed by the person.  This puts the person in control at a time when they may feel that they don’t have much control over the cancer, the treatment, the side effects, or their life.

Clients often say they are concerned about who will be their point of contact. There may be a number of different health and social care workers involved, which can be confusing for people. For a person affected by cancer an advocate can be a consistent person alongside them helping to access services, and navigate the health and social care system. An advocate can be an asset in assisting good communication between client and health and social care providers and between the professionals and client. An advocate can ensure the person’s views are represented, helping the client to get the most out of health and social care and promoting the client’s independence. Cancer advocates are great examples of the way in which advocacy support complements the work of both health and social care professionals.

Sam Bond 

Phone: 01273 737888, Email: Cancer Advocacy@bh-impetus.org

 

Mindfulness Awareness

The Staffordshire and Wolverhampton Cancer Advocacy and Support Project provided by the Beth Johnson Foundation applied for a Macmillan Team Learning and Development Grant which was successful and enabled us to participate in an Introduction to Mindfulness.

Mindfulness is an ancient Buddhist practice which is very relevant for life today. Mindfulness is a very simple concept.  Mindfulness  means paying attention in a particular way:  on purpose, in the present moment, and non-judgementally.  This increases awareness, clarity and acceptance of our present-moment reality.

Mindfulness does not conflict with any beliefs or tradition, religious, cultural or scientific.  It is simply a practical way to notice thoughts, physical sensations, sights, sounds, smells – anything we might not normally notice.  The actual skills might be simple, but because it is so different to how our minds normally behave, it takes a lot of practice.

The following are reflections on the 2 days by some of the Volunteer Co-ordinators……..

“On 14th and 15th July I joined the rest of the Beth Johnson Foundation staff at Acton Trussell to find out about Mindfulness. The session was led by Miro Cansky who gave us  an interesting introduction to the technique.

Mindfulness has been used for many years by different groups in a variety of settings and it has gained in popularity more recently.

The art of ‘living in the moment’ is a great skill to have when living or working in stressful situations with people who are experiencing major difficulties in their lives. Although this was just a taster session, I hope that it will be a useful tool both personally and when supporting people affected by cancer.
It was also nice to spend time with work colleagues away from the office and I found this to be a great team building experience; lying on the floor and deep breathing is a great way to get to know your fellow workers!

Thank you to Macmillan for the funding and to Miro for giving us an insight into the practice and advantages of this interesting technique.” Hilary Stefanelli, East Staffordshire Area Co-ordinator

Mindfulness – Collette’s view

I wasn’t sure what to expect; the concept of Mindfulness seemed to be a ‘hippy’ style activity.  However, with an open-mind and overnight bag, I joined my colleagues from Staffordshire and Wolverhampton Cancer Advocacy and Support Project and staff from the Beth Johnson Foundation at The Moat House, Acton Trussell for a 2-day Introduction to Mindfulness Workshop.

I hoped that my outcome of the workshop would be to discover a way to de-stress and relax as the vast majority of my time is spent with clients in emotional distress.

 

My outcome was achieved and exceeded!  To sit quietly focusing on the ‘here and now’, using my senses of touch, sight and sound and, allowing myself the time, without the guilt, out of a busy schedule.

Looking forward, I intend to put into practice what has been learnt as the workshop was only an introduction to the process of being Mindful and that further learning is to be had through practice.

Collette Cooper, North Staffordshire Area Volunteer Co-ordinator

 

Living in the moment – it sounds like a simple enough task but it was not until my involvement with the ‘Mindfulness’ taster sessions that we were able to take part in last week that I realised just how hard it is for me to really clear my mind and focus on simply  ‘being’. It really is a whole new mindset.

So, following on from our training last week, I have tried to make it a point of sitting and practicing the simple ‘FOFBOC’ (feet on floor, bottom on chair) meditation technique that we learned, just for a few minutes, at least once a day. The idea is, that by sitting comfortably and purposely paying attention to things as they are at that present time, it will become second nature for me to regularly re-centre my thoughts and help me to become more aware of my feelings and body sensations.

It is thought that practising mindfulness can give more insight into emotions, boost attention and concentration. Sounds good to me! So I thought I should at least give it a go. Watch this space… Amanda Carter, Central Staffordshire Area Volunteer Co-ordinator

Human rights and advocacy

Emma Voglemann, a volunteer for the British Institute of Human Rights (BIHR), writes about why human rights are so important for advocates:

For advocates, human rights are a shared language of duty and respect that can be used to achieve good outcomes out of court. The Human Rights Act means that public authorities have a legal obligation to respect human rights when they make any decisions involving a person’s life. Advocates can raise human rights in discussion with a person or public authority and they can use human rights to give older people a voice in decisions about their own life, even if they may not have capacity for that particular issue.

BIHR have worked with older people and advocates to help them understand and benefit from human rights. In our Guide for Older People we encourage older people to know how to utilise their human rights by recognising situations where rights may be at risk and how to seek help. Through our partnership work, those we work with have used the Human Rights Act to achieve real outcomes.

Human rights advocacy in real life: Using the Human Rights Act to challenge blanket use of tilt-back chairs in a nursing home.

Laura is a consultant who works with older people, and having worked with BIHR is a keen proponent of human rights in NHS services. She was visiting a nursing home in London when she saw several residents were effectively trapped in special ‘tilt-back’ chairs. The chairs were being used because they stopped people in the home from trying to get up, falling and hurting themselves.

Sadly, this meant many older people who could walk weren’t able to get up and out of the chairs. Instead they had to wait for staff to come and get them out of the chairs so they could go to the toilet or go and get something to eat. The residents at the home who were previously very independent could no longer choose what they wanted to do with their days, and because they couldn’t walk around very often, they started to find walking very difficult.

Laura was concerned this practice in the home raised human rights issues. She talked to the residents who were kept in the chairs, who told her they felt their dignity and independence was being taken away from them. Laura realised that by not allowing the residents who could walk the freedom to move around, their dignity and autonomy, protected by the right to private life in the Human Rights Act (Article 8) was being risked. She was also concerned that for some of the residents, it might even be inhuman or degrading treatment, which is never allowed under the Human Rights Act (Article 3). Laura raised her concerns with the staff and using human rights language they were able to see that treating all of the residents the same in order to protect the few who needed the tilt-back chairs was not appropriate. Residents who could walk were no longer placed in the tilt back chairs and staff encouraged them to start using their walking skills again.

BIHR’s project work with older people and advocates 

Through partnership projects with older people’s groups, including local branches of Age UK, we have worked to empower older people through training around how to use the language of human rights in their daily lives and to influence service delivery and policy.  

Through this work one group of older people in Derby made a DVD on the issues facing older members of the lesbian, gay, bisexual and transgender (LGBT) community who live in residential care, which received extremely positive feedback. (Watch the film here). Another group looked at the lack of public toilets and transport links, which helped them collaborate with other groups affected by this issue, such as disabled people and mothers with young children. They raised awareness about this issue and engaged with local officials.

If you’d like to find out more about our work with older people, or to find out more about how advocates can use human rights, check out our resources aimed at advocates and older people. All BIHR’s resources are freely available here.

If, like us, you think human rights are worth protecting, find out how we can stand Together For Human Rights, check out our page: The Human Rights Act: Protect What Protects Us All

Sandwell’s Juanita Williams appears on Radio Raaj FM

As part of NCVO Volunteers week, Volunteer Co-ordinator Juanita Williams secured a spot on Sandwell’s local Asian radio station, Raaj 93.1fm.

No stranger to Raaj FM, Juanita had been on the show previously to talk about her work in the local voluntary sector and also when she carried the Olympic Torch in 2012.

Juanita Williams

 

The Friday afternoon slot is reserved for Community Affairs which includes Health Awareness and the format is generally a question and answer session. The programme starts with news, weather and music followed by an introduction from the DJ Manny Khaira who welcomes his guests.

Manny Khaira of Raaj FM

 

Juanita was able to talk about volunteering opportunities on the SCOPA project and this was translated into Punjabi for the listeners.  There was then more music before talking about the SCOPA project generally, again translated into Punjabi.

The result was that we had two phone calls in the following week asking about the service which was promising and both have been referred to the local authority Welfare Rights team for benefits checks.

Jodie McCaughan, Sandwell Cancer, Older People and Advocacy

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