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:

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.