In today’s post Karen Pigott, from programme partner Dorset Advocacy and Dorset Macmillan Advocacy, tells us about some recent training delivered after a range of delivery partners identified a need for support on complex case work:
On the 16th and 17th February 15 brave souls from a variety of projects across the country attended Complex Case Training in London. The training was commissioned by OPAAL for the Cancer, Older People and Advocacy programme and designed by Jenny Purcell from Dorset Advocacy and delivered by her and myself.
This was the first time the training was delivered so a big ‘thanks‘ to the participants for their suggestions and patience as we tweaked some timings and content to accommodate everyone’s needs.
There was a good mixture of volunteer peer advocates and paid staff with a range of experience which really added to the dynamics and depth of the two days. The importance of being able to share ongoing complex and challenging issues in a supportive environment with a problem solving approach cannot be underestimated.
At the end of the course all but one participant scored themselves as having increased confidence in approaching complex case work.
Every participant received a ‘Tool kit for Complex Case Training’ to enable them to cascade it through their own organisation.
It was an intense two days but hopefully everyone is confidently applying everything they learnt and shared in whatever situation they find themselves in!
In today’s blog post Kathleen Gillett from Dorset Macmillan Advocacy looks at the issues facing older people affected by other long term conditions as well as cancer:
Coping with cancer is one thing, coping with cancer and one or more other long term condition is another. Peer advocates listen to the people they support to discover what matters most to them and may be surprised to find that having cancer can be the least of their worries.
At Dorset Macmillan Advocacy we have collected some information on the long term conditions and health problems that the people we are supporting are living with. We have found that of 110 people referred to us for support in 2015 50 have at least one other long term condition, 26 have two conditions including drug and alcohol dependency issues and 7 have 3 conditions. The conditions include sensory loss, diabetes, heart condition, memory problems, arthritis, MS, ME, epilepsy, hiatus hernia and mental health issues. Not everyone wants to disclose all their health issues and we have not in every case methodically recorded where this information has been given so I think it is safe to say that there are likely to be more issues than we actually know of.
In fact 70% of people with cancer have one or more additional long term condition according to research carried out by Macmillan Cancer Support. It’s clear that the situation for people with limited social support networks, such as older people, can be very difficult. Independent advocacy services such as ours can be flexible and support people with their concerns when they are wider and more complex than the cancer diagnosis.
Health professionals are aware of the implications especially as regards treatment options for older people. The British Geriatric Society has a special interest group (SIG) for Oncology which met for the first time last September and Kath Parson of OPAAL gave a presentation about the Cancer, Older People and Advocacy programme. In a write-up of that event Dr Lucy Dumas said ‘Older patients with multiple medical co-morbidities and/or issues with care or coping at home represent a significant challenge when it comes to evaluating whether or not they will be able to tolerate potentially toxic therapies’.
Over the next year we hope to gather more information about the wider health issues of the people that we support. As well as asking for their feedback on the difference our service has made we may be able to gather their views on how their other conditions have impacted on their cancer patient experience.
Last week we heard the sad news that one of our Older People’s Cancer Voices steering group members passed away. OPAAL’s Ang Broadbridge shares her thoughts on a recent blog post of Max’s that struck a chord with the steering group:
I met Max Neill in the summer of last year at a Coalition for Collaborative Care event; Max was sitting at the same table as me and he shared with us copies of his one page profile during the break. I’ve worked with one page profiles with adults with learning disabilities, and our Cancer Older People and Advocacy partners were also exploring them with Helen Sanderson Associates so I was interested to know more. Max told me about his bowel cancer diagnosis and how his profile helped him express his wishes; it’s always good to get chatting with someone who ‘gets advocacy’ and so I followed him on twitter.
Some time later, when we came to look for representatives for our Older People’s Cancer Voices steering group, my colleague Janet Cullingford from I-CANN suggested Max. I hadn’t made a connection between his role at Connect4Life being based in the same locality as I-CANN but was really pleased when our paths crossed again and he agreed to join us.
Although he didn’t manage to make a steering group meeting we kept in contact via social media and the telephone, Max signposted me to lots of great resources and kindly said that he’d be happy for us to share aspects of his story from his blog as part of our Older People’s Cancer Voices storytelling.
I found that everyone I came into contact with who knew Max spoke very highly of him, and his generosity of spirit, so at our last steering group meeting in January his ears must have been burning because we were talking about his latest blog post which we’re sharing with you today. This post appeared on Max’s blog at the end of December 2015:
Christmas in the Hospice
I didn’t expect to be waking up on Christmas morning in a hospice.
But my life’s like that now. The results of one scan can throw all my plans up in the air.
And the results of my last scan weren’t the best I could have hoped for.
I’m far from dying yet though. I got offered the place here at St Catherines so that I could get on top of my pain.
I’ve been taking the wrong attitude to my pain. I’ve stoically tried to tough it through during the day, leaving me knackered at night. This approach has meant that I simply haven’t left myself open to the joys that life can offer. Most nights I’ve ended up frantic as the pain bites in: no good for me, and no good for my wife who gets disturbed every time.
So over some time here, with the help of the nurses and medics my meds are being adjusted, and I’m finding out that stuff I didn’t think worked does work, as well as how to space it, how to be less anxious about it.
And being here has also given me a chance to talk to friends and family about the reality of my illness. I think maybe I tend try to protect people from my bad news. This hasn’t done them any favours, and I’ve been told off about it! The word ‘hospice’ on the front door means there can’t be any pretence. I have a pretty aggressive cancer. It’s not behaving like a normal bowel cancer. Even with the very best chemotherapy my chances are maybe one in twenty.
Of course his doesn’t mean I’ve no chance. I know people who’ve survived worse odds. I’m hoping to get onto a clinical trial, and will work with Christie if any become available. The lads play Dungeons and Dragons. They know how hard it is to roll a 20 with a 20 sided dice!
Christmas was lovely here.
It is a privilege to wake up among the dying. It is a privilege to be cared for by dedicated people, including volunteers who have come in over Christmas and the ‘dog end’ days of the year to support the people here. When the news is so packed tight with inhumanity, it is a true privilege to see countless small acts of humanity happening, in the very darkest times of the early morning, in the warmth of the cleaner’s voice as she moves from room to room, in the humour and stories of the nurses and helpers.
As I’m writing, a lovely lady has come in. She takes all the flowers donated to St Catherines’ and turns them into beautiful smaller arrangements that she leaves in every room. Every few days she comes back to refresh or replace them, she has been doing it for years and nothing seems to stop her. Humanity expressed through her artistry and persistence.
Years ago I read a great book by Boykin and Schoenhofner that seems to be a well kept secret. It’s called ‘Nursing as Caring’ and it’s always stuck in my mind far more than the technocratic rather mechanical ways of theorising nursing care.
I think the future study of great care, the understanding of what really makes good person centred support for people will actually be an inquiry into our own humanity and how to use it effectively for people. I’m witnessing that when a caring organisation enables everyone in it to find ways to express their humanity, to listen to people and deliver what is important to them, it becomes a true House of Care, a genuinely nurturing environment very different from some of the toxic institutions we seem to create so easily. It’s too easy to sacrifice our own humanity in the name of ‘professionalism’ or for countless other persuasive reasons.
The Christmas tree in the chapel here is incredibly beautiful. Children have cut out paper angels, and written messages to hang on the tree for their parents who died here: “I hope heaven is special mummy”.
I managed to spend time out at home over Christmas too, and had great family meals on Christmas Eve and Christmas day, great fun playing Articulate! I think the plan is for me to spend a few more days here, then to get home. I’m going to use that time to do some writing. Isabel Allende said “Write what should not be forgotten”. I’m hoping to write some very personal and private stuff for my family and build it into some kind of personal cancer journal that includes some of the person centred thinking tools like my life story, my hopes and fears and a few things I’d like to do. I don’t have many big ‘bucket list’ ambitions. A trip to Disneyland would be my idea of a nightmare!
I do intend to go to watch the great poet John Cooper Clarke when he appears in Preston, I saw him a few times 30 years ago. He would be the highlight of CND demos in Manchester bringing his cutting cynical humour dispensed in economical rhyme as a great counterpoint to the interminable speeches of the assorted politicians! He’s no stranger to death among his friends himself at the moment: “I could go to five funerals a week. But that many vol au vents isn’t good for you”
Time with family. Time with the people special to me. That’s what I’m focussing on right now.
Lynne Wright is a member of our National Health Professionals Board. All members of this board are volunteers who give their time freely to advise us on how best to work with our health professional colleagues to increase referrals into our independent advocacy support service.
Lynne wrote the post below explaining her recent experiences arranging care services for her husband. I’m grateful to Lynne for sharing her experiences which highlight the great need faced by so many older people who do not have someone like Lynne to speak up for them.
On the first of October, my husband had a fall that resulted in brain damage. He was in hospital for ten days, home with the services of ‘Hospital at Home’ for almost four weeks, and then discharged leaving me to sort out an agency to take over his care. A social worker was appointed for him and a care plan worked out on paper. Putting this care plan into action has been so time consuming and even now, five months later it is still not fully in place – as we are still trying to arrange what they call his ‘enabling’. We are getting there, and life is getting back to ‘normal’ or as normal as can be but it has made me realise how very difficult it must be for some older people to cope with this type of problem. I am lucky, I live in an area where I have good access to good services, and I am capable of chasing people but I have found it very frustrating trying to get through all the bureaucracy involved. Not to mention dealing with all the financial matters.
My husband’s care plan is now working quite well, I am able to get away for the day, stay overnight, and will be away for four nights this week. Arranging cover requires having good organisational skills and a pool of people and services that you can rely upon. My thoughts regarding this relate to older carers, many who may have mid dementia or who find it all too complicated and frustrating to organise. The new Care Act does have provisions for carers, but accessing a full Carers’ Assessment is almost impossible to arrange – you have to know your rights and be firm and insist upon them – again this might be difficult for many carers.
I am a cancer patient and many cancer patients find themselves in very similar circumstances to those I have mentioned above. Many older patients are on long – term treatment and have little or no support and find they just do not know where to turn or what to do. This is where Independent Advocacy is so important and just knowing they have someone they can turn to for help and support can make such a difference to their wellbeing.
Lynne Wright: Member of the Cancer, Older People and Advocacy Health Professionals Board
Lizzie Sturm gives us the low down on what’s been happening recently at project partner Advocacy in Barnet:
We seem to be spending so much time recruiting! The last two months have seen us interview for a Volunteer and Training Co-ordinator, a Project Manager as well as Volunteers for the Barnet Macmillan Advocacy Project. I hope that people will get to meet Tasneem Goheer, the new Volunteer and Training Co-ordinator who started at the beginning of January over the next few months. The calibre, passion and dedication of volunteers that join us never fails to humble me.
As a Macmillan partner, we positively benefit from both the learning of COPA projects sharing their experiences at Board meetings as well as directly receiving the support and training of Macmillan. We had our “induction” last week with the Macmillan Involvement Coordinator Raj Bhattacharjee, informing us of what we can access as well as their expectations. All staff on the Barnet Macmillan Advocacy Project will be attending their formal new professionals’ induction day in due course. We’ve also been introduced through OPAAL to our mentor organisation Dorset Advocacy, a really brilliant idea.
Despite the changes, Barnet Macmillan Advocacy Project is making a difference and the relief that advocates can offer is palpable. However, so many of the issues that we have dealt with can end up being a race against time. Betty Zulu is the Barnet Macmillan Senior Advocate currently supporting Mr P, who has terminal cancer (final stages) with housing issues. His wish is to transfer the tenancy in his name over to his children as he is very worried about leaving them homeless. The housing department are of course adamant that it is not possible to transfer tenancy to children. Advocates relish in the words “not possible” and Betty has been combing through tenancy and transfer laws to challenge this. Mr P has already noted the difference at the housing department since informing them he has an advocate. Betty has now identified that transfer to children living at home can be allowed so a positive resolution and peace of mind to Mr P is on the horizon. We hope that this will be completed within his lifetime. Betty says “I found it very important to provide support to Mr P as his health is quickly deteriorating. He was becoming very breathless even as we spoke. His prognosis is not very good. I feel very gratified that I am able to provide support for Mr P as he informed me that he had been to so many other organisations but unable to get any help”.
Having two jobs is interesting. Remembering which keys, phone and ID badge to take out often gets confusing (especially at my age) but wearing two hats when networking at meetings has its benefits. With this in mind I went along to talk to a Cancer Support Group run by one of our Local Cancer Champions Board (LCCB) members. Although three of the women were interested in joining us as Advocacy volunteers; health, work and life in general got in the way and to date none of them have joined us – yet.
Juanita
With my HLF hat on I went back to their group this week with one of the artists we have commissioned to work on the project. Mandy Ross is a poet and is creating work for our project based around Black Country dialect and food. She read some poetry to the group and then asked them to reflect on their childhood and try to write down some of their memorable food stories. This session normally lasts for an hour, on this occasion they stayed for almost two.
It was lovely to hear other people’s memories and the laughter resulting from their tales. We have a saying in the Black Country that you can eat everything on the pig “but the squale” (his squeal!). It would seem that this group remembered vividly the smell of tripe boiling in their grannies kitchens, eating raw rhubarb dipped in sugar, toasting pikelets (crumpets) by the open fire, popping peas out the pods and chobbling on Teddy Grays suck (sweets to you).
barley sugars
pear drops
aniseed
All in all, it was a great session and Terri Rutter, our LCCB member, thanked us for including them in the project and said what a breath of fresh air it was for the group, who for obvious reasons, are not always in the most cheerful of moods. If you are interested in our project, go to www.ourspake.co.uk
Incidentally, if you listen to the Black Country nativity you will hear a member of Sandwell Advocacy staff and two of our volunteers! That’s what I call making the most of having two jobs!
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.
On World Cancer Day Aneesah, a professional advocate from ICANN (Independent Community Advocacy Network North), gives us her take on delivering older people’s cancer advocacy:
My experience as working as an advocate on the Cancer, Older People and Advocacy project has varied vastly. Through my work I have found that one of the greatest obstacles both with professionals working in the cancer field and the clients themselves, was initially actually understanding what “advocacy” is. Although in general terms most clients and professionals alike understand that an advocate can effectively aid in putting across opinions, in many other respects I found that lines can be frequently blurred.
The ICANN team with Aneesah on the left
It can sometimes be unclear as to what an advocate can and cannot do. An example of this occurred when I was attending an appointment with a client and they were given various treatment options, which they appeared to be confused about. Once I relayed the information to the client put forward from the consultant, the client then felt that it was I as the advocate that needed to make the best decision on her behalf! I had to encourage and empower her, to explore the options by using me as a sounding board, and then to talk through together what she wanted to do.
These situations can as an advocate be challenging but upon reflection I also now acknowledge that it is important as an advocate to be able to voice concerns to medical professionals. With the same client at a subsequent appointment, when it was obvious to me that she was not taking it what was being said, I asked if we could take a break and this gave me the opportunity to fully discuss in depth the pro and cons of the various treatments that she was being offered.
This ensured that the client was able to make a clearer conscious choice and in turn made them feel more at ease as they became more fully aware of what to expect. It also meant that at future appointments we were able to prepare in advance, questions she wanted to ask and things we needed to discuss, which in turn gave her more confidence about being in control of her cancer journey.
Similarly as an advocate I found that on some occasions health professionals viewed my presence when attending with clients with some suspicion. This can sometimes be intimidating for the professionals involved as I have been under the impression that maybe they felt that I was there to act as an independent witness to ascertain any faults or failure of medical procedures on their part. However, once they become familiar with me and how advocacy can facilitate the client in a positive way they too began to see the benefits of having an advocacy service for their patients . The most prominent example being that many of the medical professionals involved in cancer treatment do not physically have the time or capacity to thoroughly go through the finer details with all their patients. With advocacy support they then have returning patients who are more confident and comfortable, and less likely to miss medical appointments, as they are more aware of what tests or procedures they are attending for, what future plans are, and what to expect from their patient experience.
Many clients are understandably confused or feel disorientated particularly when it has not been long since they have been diagnosed. They are also given a considerable amount of information which initially may be difficult to not only understand but also to accept. Being an advocate has given me the opportunity to facilitate people in focusing what they would actually like to do regarding treatment or finding out about other services that would improve their quality of life.
As an advocate I have realised that it is often easy to concentrate only on the client who has been diagnosed with cancer. I have realised that cancer can have an equally profound and devastating effect not just on the patient but the family and friends around them also, and have seen first-hand the value of support to carers
More recently I have had a client that has been diagnosed with cancer three times in the last ten years. Although she herself was going through emotional turmoil it was equally difficult for her partner to come to terms with a situation that had been ongoing for such a long length of time. In this situation advocacy was required by both. They each needed someone to listen to them as they went through the same journey encountering different emotions from two perspectives.
I would consider that my role as an advocate has been beneficial, particularly to those who are vulnerable and most isolated. I have also become aware though that even those clients who are fortunate to have an extended network of family and friends can still feel alone in their personal journey. I have come across situations where clients have felt more at ease in voicing their anxieties to me as I am someone who is independent and non- judgemental. Often people feel that there are things they cannot discuss with those closest to them due to fear, awkwardness, embarrassment, and sometimes pressure to feel positive and optimistic when they are actually not feeling these things. One of the benefits of advocacy to the client is to offload and explore these concerns.
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.
In this post Valerie McGregor, advocate at KPAIS (Knowsley Pensioners Advocacy Information Service), tells us why it’s important that every older person affected by cancer has access to advocacy support if they want it, even those with family and friends around them:
I have recently had the pleasure of supporting a lovely lady who I shall refer to as Jane. Jane self referred into our service when she felt that she needed someone to talk to outside of her family. Although Jane has a very loving and caring family and who are supporting her through her cancer experience, she didn’t want to burden them as they didn’t want to talk about practical matters arising from her diagnosis and prognosis.
Our first telephone conversation was about practical issues like benefits and how we could support her with form filling and making a claim, as well as information on other services which could offer practical support. I visited Jane at home to do her form and we had a long chat about everything that was important to her and what she wanted. Jane had said how nice it was to discuss matters without burdening her family.
Jane was very optimistic about her illness and the options available to her, but unfortunately Jane wasn’t able to have the surgery that was first discussed. As a result she now wants to put her affairs in order and generally wanted to talk about how she felt about what was happening to her, and what support we could offer her with general practicalities.
Jane has expressed her sincere thanks for the practical and emotional support we provided and how having a Cancer. Older People and Advocacy advocate has helped her to stay independent and in control, and asked that I stay in touch with her and visit her frequently just to have a chat and a cup of tea.
Older People Living with Cancer 