A case of mistaken identity? A matter of life and death

My Dad died four months ago from bile duct cancer, cholangiocarcinoma. Since then I’ve seemed to blog less, and in a way that may be no bad thing, I’ve been doing lots of thinking and reflecting and recharging, but have had less concentration and less inclination to put fingers to keyboard. Then this week a chance conversation on twitter with the lovely @ChrisandHarvey got me thinking, and suitably wound up enough to write this blog post. I’ve followed Chris for a couple of years, he’s a hugely inspirational guy, Dad to his son Harvey, and he works as web manager for Weldmar the hospice in Dorset; go check him out. He retweeted this tweet:

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This just left me feeling quite deflated, I wasn’t as philosophical as Mrs Glove and not as quick to just accept that was that. I have blogged on the life changing care that our local hospice, Rowcroft, provided for my Dad and our family in his final days. The Hospice at Home team made an immeasurable difference and I have committed to myself to continue to raise awareness of the excellent work they do, which is sort of where this post comes in.

So what’s the problem? Well luckily for you the CEO at Weldmar, Alison Ryan, wrote an excellent blog post outlining why this is problematic. I’m not going to repeat all that Alison says, you’d be better off going and reading her original post, but in a nutshell she is drawing attention to the fact that too often people in the local area are under the mistaken understanding that hospice care is provided by Macmillan. This matters for two principle reasons, the first is around fundraising, people going onto the streets to raise funds as a thank you, but mistakenly providing them to another incredibly valuable charity. The second reason of course is more pragmatic, if people don’t know who is providing their care and support, then what happens if they need to complain or make a request? Alison draws the brilliant analogy that not all vacuums are hoovers, the same goes for end of life care, not all hospice care is provided by Macmillan, in fact as I understand it in the South West very little (if in fact any?) is. As I understand it this is a common problem faced by many hospices, how do they get the message across that they are providing the service that they do.

Is it a case of overload? It’s a simple fact of life that by the time you encounter support from a hospice then you are already having to deal with some fairly harsh realities, life and death decisions and if our experience is anything normal you are probably quite simply overloaded. Whether you have been dealing with a terminal illness, or spent years living with a medical condition, or indeed if you have just found out that your life is limited, there’s a good chance that you are exhausted from the information and advice overload; you are likely to have met more professionals and individuals than you can even remember, you struggle to remember their name (and trust me it’s awful when you are so grateful and yet can’t remember the name of the person with you) never mind who they work for; you are dealing with so much that who funds the staff supporting you isn’t likely to be at the front of your mind. When Dad was in his final weeks one of the things I did once the hospice staff started visiting us at home was start a list on an empty cereal packet that happened to be in reach, of the names of the people as they arrived – this served two purposes, it meant that I’d be able to check each time I forgot who was upstairs with Dad, and it also meant that we had a list for when we came to thank people afterwards. It’s not like me to be so organised and I don’t know why I did it, but I’m glad I did.

Do we just not like talking money? So, at what point should the hospice be making it clear who funds the service someone is accessing. It could be because we’re terribly British about it, and because we don’t have a great awareness or general literacy around the cost of healthcare, but at no point was the cost of Dad’s end of life care discussed with us. That may well be completely appropriate, and I know that no-one who works for a hospice would want a family availing of their services to worry about the cost. Despite this, I know that my Dad for one was incredibly aware that other people could be benefitting from the support he had as an inpatient at the hospice, in fact I think it was one of the reasons why he wanted to return home. I’m not sure, even now, on the relative costs of providing an inpatient service versus the hospice at home service, I have seem some statistics about what it costs to run them but I’m not sure whether it was cheaper for him to be supported to die at home, I suspect not. 

Anyway, this wasn’t a post particularly about Dad, it was a more general sense of what limits us from discussing, or knowing, the costs of such a service. Maybe we have a long way to go before people are confident or comfortable in discussing the costs of care, I know when I blogged about this before it got a very mixed response in the comments and on twitter.

Is it simply a case of mistaken identity? Unfortunately it seems a bit of a case of David and Goliath, Macmillan are an excellent organisation, much larger than any of the independent hospices across the country providing palliative care. They are also very canny and often pump prime the establishment of services and fund a small number of posts (there’s more in Alison’s blog post about this) and I guess once you are established as a Macmillan Consultant/Nurse/Advisor then you aren’t likely to ever really change in people’s minds who you meet.

Macmillan are also blessed with a very strong brand, and lots of hospices aren’t in my opinion, although I do *love* the new Rowcroft branding! I’m sure that it’s a hard sell to trustees, colleagues and supporters if you want to spend what hard raised money is available on changing branding but I can’t but think it might help in some instances. Short of rebranding and awareness raising, I wonder whether a conversation should be happening at a more strategic level. I’m under no illusion that this blog post is likely to reach more than a handful of people, raising anyone’s awareness is a good thing, but a more straight forward honesty and awareness from Macmillan might be welcomed too, after all we all want the same thing, to provide a quality end of life care service and for people to have greater awareness within that of who is providing their support. If the recent horse meat debacle has taught us anything, perhaps it is that a case of mistaken identity is not one that the public take too kindly too.

So the next time you decide to give to charity or sponsor someone, or are looking for an organisation to raise funds for, then consider your local hospice, they’re likely to need your funding far more than some of the larger organisations.

0 comments on “A case of mistaken identity? A matter of life and death”

So much of what you write resonates with me and I just wanted to add that my dad also received the most wonderful treatment and care (at home but also in the hospice itself for the couple of weeks up to his death) in a local independent hospice so this particular resonates with me.
While it is an independent hospice, and obviously I had personal contact with them, I hadn’t really considered the issue of awareness raising and PR before reading this. I wonder if an organisation like Help the Hospices ( http://www.helpthehospices.org.uk/) have a greater role to play in extending awareness.

Thanks for writing this. Something to ponder.

Thanks for commenting – have taken up your suggestion and shared the blog post with Help the Hospices on twitter and will update if I hear back from them, G

Kath says:

Less than a year ago my husband died from cholangiocarcinoma and we couldn’t have managed those last few weeks without the help of our local hospice St Giles in Lichfield.My husband had the peaceful death at home which he so deserved because of the wonderful help from them.I will be eternally grateful for the help and support that we received from Heather and her team and make sure that any fundraising goes direct to them.It is good that you are making people aware that these hospices do so much for us but they do need our support.

Thanks so much for taking the time to comment Kath. It’s reassuring to know that your husband and your family were also supported to have a good death; one of the reasons I started blogging was to raise awareness that cholangiocarcinoma wasn’t all horror stories! So thanks for sharing your experience too, G

Hi George,

You’ve raised some really good points in this blog and a few that I would like to expand on. You’re absolutely right that people often get cancer charities mixed up. And it’s frustrating for us as it is for you. Cancer Research, Marie Curie, Breast Cancer Care – they’ve all been mistaken for Macmillan at some time and vice versa. We know that some people still think that Macmillan is only involved with end of life care and that works against us since we do so much more. We work hard to build understanding that we are there from diagnosis onwards with a range of support and our brand has become stronger as a result. So we are sorry if people associate services with Macmillan when they are in fact provided by others. This is not our intention and we always work to correct that when we’re made aware of it.

You make an interesting point about the relative costs of EOLC services, including the relative cost-effectiveness of home vs hospice care. We are in fact funding a study to consider this. The findings indicate that both models are effective in providing person-centred support for both the person with cancer and their family.
Our work in pump-priming services is important to the support we deliver. It allows us to create new services to support people living with and dying from cancer that would not otherwise exist. It is thanks to the pump-priming model that we have over 7,000 specialists working in health & social care whose job is to reach and improve the lives of people living with cancer who would not otherwise exist. However we know that not enough people are benefiting from access to Macmillan-supported services. This is why we’ve launched our ‘Not Alone’ campaign to highlight the isolation that people face and to raise more money to develop appropriate services to support people living with cancer

Best wishes,
Juliet Bouverie
Director of Services
Macmillan Cancer Support

Hi Juliet, Just wanted to send a quick response to say thanks for replying – but I’ll write another fuller response once I’ve slept on this. I’m not sure it really addressed the points I was raising, but maybe that’s because I wasn’t clear enough in the blog post. I’ll try and reply again tomorrow! Thanks again for bothering to comment, George

Hello again Juliet, I wanted to come back to you on your response to my blog post. Firstly, thanks again for engaging with it. I would appreciate hearing your thoughts, if you don’t mind, on what I consider to be the crux of my post – which is whether Macmillan feel that they have a responsibility to be more explicit about the services they are providing/funding and what they are not.

So while I appreciate that people may confuse the cancer charities that you reference, they are all national organisations and I don’t think that is in the same magnitude as confusing your organisation with an independent hospice who really *only* has their local community to raise funds from.

Additionally while I appreciate your comments about the value of pump priming provision, and I have no doubt that ensures posts exist that might not otherwise….if that legacy is confusing moving forward then do you not feel that there is more that could be done to straighten that out? For example, perhaps you could insist that when your funding ends specialists no longer use your name on their uniforms, badges, email signatures, office doors etc. It is these confusions that I think are potentially undermining the work of others in the local area and ultimately may yet lead to the undoing of some of the intended benefit, if funds can not be made available to the right places to fund this support longer term.

If you have the time I’d really appreciate your thoughts on this comment too. George

Alison Ryan says:

Hello Juliet and George
As I wrote in my original blog “Of course the confusion is not helped when Macmillan’s current fundraising letter talks about nurses doing the work Weldmar nurses do in Dorset and asks for money to support them” . This maybe a very effective way of raising money for Macmillan ( and of course I will be a little peeved that we are doing the work and they are getting the money) but more importantly I think it locks the image of Macmillan in the public mind as an organisation there for dying cancer sufferers – and that all cancer sufferers will in fact die.

I think some of the best work Macmillan is currently doing is on survivorship and reducing isolation – but that is not the work cited in those nurse-written letters which flop through the door nor the appeal blurb which appears from time to time in local papers. They talk about the nice nurse who comes to you at home……… So for many people Macmillan is inextricably linked with work they do not do, while they overlook the really excellent stuff it does do and the message of hope contained therein. Which is a shame. Especially for patients.

The naming issue George points out is of course another part of this confusion. In my experience the public does not like being confused by charities and whenever I am asked at meetings about the Weldmar/Macmillan fit and I explain, I am greeted first with incredulity (which is why I carry Mrs Palca’s letter saying what Macmillan fund in West Dorset with me as evidence ) and then the very real anger of people who have genuinely fundraised for Macmillan and find that the money they have raised is going to be spent very differently from their expectations.

In my view:
1. Patients and their families need not to be confused about who does what.
2. People need to understand that survivorship and isolation are just as important as End of Life Care.
3. The public needs to have confidence that charities are transparent and honest.
4. Macmillan’s modus operandi is not helping with any of the above.

Alison Ryan
CEO Weldmar Hospicecare Trust

Thanks for commenting Alison, I especially agree with the need for transparency and honesty – I guess that Macmillan feel they are operating within recommended boundaries given Juliet’s latest comments so not sure where else to go with this other than to continue raising awareness at local level, G

David Praill says:

Dear George,

Thank you for your extremely thoughtful blog. It raises some important issues.

Help the Hospices is the national membership body for hospice care, supporting the independent local charities that provide the vast majority of hospice care in the UK. We work hard to raise awareness of the care that local hospices provide, and of the vital importance of the support of the communities that they serve. Almost all of the hospices we have in this country owe their very existence to the generosity of local people who provide the majority of the funding to pay for their work. Government funding for hospice care accounts for an average of just 34% of the costs of providing the care, although there is wide variation in the level of NHS funding that hospices receive.

Hospice care touches the lives of many of us – one in two people know somebody who has been cared for by a hospice, and families rate the care their loved ones receive very highly. Around the country, local charitable hospices care for around 360,000 people each year.

Many charities work closely together at a local level to provide the care that people need at the end of life, and that partnership between charities is an important way of maximising the impact of charitable funding. From the perspective of patients and their families in need of care, the most important thing is that they get the support that they need. Of course, one of the consequences of such partnership working is that it is not always immediately clear which charity friends and families might choose to support.

In increasingly austere times, competition for charitable income is growing all the time. The Fundraising Standards Board was set up in 2006 to oversee a code of practice among charities to make sure that people can be confident about their giving. The code of practice includes a specific statement that fundraising should be open and honest.

I believe that it is that openness and honesty that is key. All charities – large and small – have a responsibility to be transparent with our supporters about what people’s hard-earned and generously donated money will be used for, and importantly, what it will not.

Where local hospices have specific difficulties with any other charity, Help the Hospices is pleased, as their national membership body, to raise this on their behalf, and to work with other national organisations to make sure that our communities get the best information to help them make decisions about who to support.

David Praill
Chief Executive
Help the Hospices

Thanks for taking the time to comment David – I think we’re all agreed on the need for transparency, openness and honesty. I’m not completely familiar with the work of Help the Hospices but have you ever considered campaigning about the work and support provided by your members and juxtaposing it against other large charities or would that be felt to be too blatant/unfair? I’m interested in how you maximise benefits when representing so many independent organisations – a big ask I’m sure, G

Juliet Bouverie says:

Hi George.

Thanks for your reply. You asked whether Macmillan feel we have a responsibility to be more explicit about the services we are providing/funding and what we are not. We only put our name to services that we have either funded or who ask to be ‘adopted’ by Macmillan and who agree to our terms. Given the strength of our brand, we are careful about only naming those services that match with our organisational priorities and that we have the resources to support on an ongoing basis with education, training, advice, etc.

We are proud to be a member of the Fundraising Standards Board and confident that our fundraising adheres to regulations ensuring transparency on how donations will be spent. We are sorry if despite this people sometimes associate other organisations’ services with Macmillan. This is certainly not our intention. In fact, as I mentioned before we also know the reverse happens, for example people often get support from a Macmillan nurse at the end of life and think it was a Marie Curie nurse.

Best wishes,

Juliet Bouverie
Director of Services
Macmillan Cancer Support

Thanks again for taking the time to reply Juliet – do you explicitly request people to remove your brand when their funding comes to an end?

I’m not doubting your fit to transparency regulations about how income will be spent, I’ve not considered that at all actually, it’s an interesting angle. My questions and thoughts were more related to how income is raised, G

I have been interested in the discussion George Julian’s blog has stimulated.

Transparency is an interesting word, covering a spectrum of clarity from completely clear to somewhat opaque. Juliet Bouverie’s latest response, in my opinion, is down the murky end of opaque.

“We only put our name to services that we have either funded or who ask to be ‘adopted’ by Macmillan and who agree to our terms.”

To me this says, ‘we do know that there are services out there that Macmillan no longer fund and have not for years but, hey, that’s ok as long as we pump-primed it and the original host signed up to our draconian terms and conditions.’

The fact that, in the ever changing world, over many years or even decades, the role has evolved through many post holders and employers seems not to matter to Macmillan, whose wish, it appears, is to remain on the coat-tails of local providers.

“…only naming those services that match with our organisational priorities and that we have the resources to support on an ongoing basis with education, training, advice, etc.”

To me this says, ‘anything other providers do that resonates with the supporting publics ingrained historical association of Macmillan Cancer Care, is open to us calling it Macmillan, if we can, through the provision of some education, get a finger-tip hold on it, and we will utilise the publics’ perception to our advantage’.

Providing access to education and training should never justify naming something ‘Macmillan’ when it is substantially funded by others, even if it does fit Macmillan’s organisational priorities. The ability to educate cannot be a blunt instrument to ownership.

Whether these two issues are overtly mis-leading is open to debate, and I am sure that Macmillan would not wish to mis-lead. However, the lack of transparency for the ‘reasonable person on the Clapham omnibus’ is, in my opinion, fairly clear.

Finally, “We are proud to be a member of the Fundraising Standards Board and confident that our fundraising adheres to regulations ensuring transparency on how donations will be spent”.

Ms Bouverie has dodged the issue by diverting the focus onto how Macmillan applies its income. By referring to the Fundraising Standards Board Ms Bouverie is attempting to borrow integrity and credibility. The issue is not how the donations are spent but the manner in which they are raised.

I ask the direct questions:

‘Are Macmillan willing to go on record stating that they, overtly and positively, ensure there is absolute clarity and accuracy, in what they tell the public Macmillan Cancer Support fund and provide?

In doing so are Macmillan willing to confirm they are proactive, accurate and open in stating what is funded and provided specifically within the local community in which they are fundraising through, for example, door to door regular giving campaigns?’

Giles Charnaud
Chief Executive
Rowcroft Hospice
South Devon

Mark Jackson says:

This is an interesting discussion and one that is long overdue. I fully support Giles and his concern about MacMillan’s lack of honesty and transparency. Ms Bouverie’s comments she is not the Director of Fundraising; if she cares to access the MacMillan Fundraising page for Worcestershire she will see that her organisation claims to provide “our …. strong team of Macmillan health professionals in Worcestershire” and proceeds to lay claim to large numbers of posts that are in fact totally funded by either St Richards Hospice, or the Worcestershire Aute and Health and Care NHS Trusts. As a local hospice we are continually frustrated that misguided patients, carers and families collect funds for MacMillan when all of the care provided to their loved ones has been provided by St Richards Hospice specialist nurses and our other services. What is also particularly worrying is the shock and hurt those families feel when they realise that they have collected funds for the wrong charity.
It is time that MacMillan stated quite clearly each year exactly what they are funding, and stop hiding behind their branding that is misleading people at a very sensitive time in their lives.

Mark Jackson
Chief Executive
St Richards Hospice

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