The Ball is Rolling

laura

I've lost so many hours, days, weeks, and months on my one-person crusade to improve public services that I wondered if anyone else was out there like me?

I've hit so many brick walls, I'm living in a rhombicosidodecahedron. 

Rather than following our lonely paths, I wondered if anyone would like to band together to try to improve services with a louder voice? 

Laura 

xx

CrazyCat

What are you trying to improve? Not sure about you, but it took me months to get a diagnosis becuase the doctor didn't think there was anything wrong with me! 

laura

I know there are lots of other people out there like me - individually trying to provide feedback to public services so that they can be improved for others in the future. I think if we were to band together, we might get a little further. For me, I guess I'm interested in:

1. NHS communication - between departments and also with patients 

2. Increased investment so no patient need wait longer than 30 days for treatment

3. Care provided holistically, so that the patient is supported in recovery and mental health treatment is also provided

4. Financial support - when people have a life threatening illness, they shouldn't have to fight for benefits and treated with suspicion. There should also be support to re-qualify if necessary

5. Patient empowerment - it should be easier for patients to raise their voices and provide feedback on services. It should be more transparent - we should learn how feedback informs NHS decisions. 

There's lots more of course! 

Sorry, you asked!! :) 

CrazyCat

Pretty strong aims there! But good ones! Yes I'd love to help if I can x

petalmoore

I'd like to see support provision extended beyond the early stages of remission, though I'm delighted thats now being done. There is very little provision in the UK for a co-ordinated response to the multiple late effects that survivors can experience, even decades after their diagnosis and  treatment, which are not necessarily actually cancer (though second cancers can and do arise following radiotherapy and chemo) but which are directly related to the treatment they've had. My Hodgkin's lymphoma was diagnosed in 1973, treated with radiotherapy the same year, and with chemo in 1973-74. At that time there was no expectation that people would survive very long, but it happened that my treatment was one of the earlier ones that had very good results, and here I still am nearly 44 years later. I had a few late effects right from the start, but they didn't impinge much on my ability to enjoy life, but it wasn't until around 13 years ago that I started to experience increasing shortness of breath, muscle wasting, peripheral neuropathy and hypothyroidism. I've also had an aortic valve replacement since the valve was damaged by the radiation, and am on lifelong warfarin to prevent blood clots forming round the valve. There are others like me, but not many, and most of them are in America. Because the issues that affect people are so varied, they cannot be managed within one medical or surgical discipline, and because there is no treatment for something which is effectively a combination of accidental injuries, there is little incentive or funding for support and/or management programmes in an already underfunded health service, when so much research is funded by the pharmaceutical industry. In common with people with other chronic, untreatable, health issues, we are expected o self-manage by eating a healthy diet, taking plenty of exercise, and ... yes, by practising mindfulness. I do all these things, except for the exercise because the neuropathy has made me virtually unable to walk) and can vouch for the effectiveness of meditation practice over many years. That's all good, but a bit more recognition and inclusion in the support offered to people 'affected by cancer' would be welcome. Even though we were 'cured' at the time, we're still affected, but most cancer charities do not see us as part if their remit.

And I second Lauratheexplorer's call for patient empowerment. Throughout the years in which I was called for followup and told that I hadn't had a recurrence, I could not interest anyone involved with the clinic I attended in the symptoms I actually was experiencing, which I repeatedly offered to share so as to build up a body of personal experiences for future professionals to draw on.

Sorry for the long post, and thanks for listening! I'm so pleased to see what this group aims to do, and would love to help in some way.

 

laura

Hi Alison,

Wow, it's really interesting to hear from someone so far along. I'm so sorry for all your consequent heath problems. I'm only a few years past my diagnosis, but I do recognise just how you described. I don't find there's support directed at the side effects of my surgeries and I'm left to get on with it in the best way I can. Healthy people cannot understand how it effects you either, particularly my peers who are in their thirties. I don't think they can get their head around lifelong health issues and just expect me to get better one day!

What would you want to change if you could? Would you like to meet with consultants across departments to discuss the side effects? I discovered this the other day and was thinking of trying it perhaps:

 https://www.macmillan.org.uk/about-us/health-professionals/programmes-and-services/consequences-of-treatment/vmdt.html

I'm not sure how helpful it would be, as it's all virtual, and I worry it will just offer the usual advice of 'eat healthy foods,' just as you say. But it is a start!

 

 

 

 

VeriteVR

I am only 15 years on from treatment, but experience major long term side effects from treatment.  I don't want to worry 'newbies', because i think those like myself who experienced these problems have frightened the doctors, so they are now much more careful about treatment they prescribe.   However, lots of us survivors have to live with the medical mistakes, and now I have given up giving to major cancer charities UNLESS they have programmes for survivors - and not pay lip service to us,but their Helplines actually gives us useful information, not just repeat NHS mantras.  I was treated at  so-called 'world famous' cancer centre (it isn't - people don't know about it abroad), but found that best online web information came from official American websites (streets ahead of NHS) and whenever I go to Europe I take time out to go to one of their hospitals for help with my latest medical problem (very easy to do - just needs a little work with Google).  I have written about how I do this on aftrcancers.com.  

It's good to know where are others in the same boat, and we need to get together and MAKE the NHS acknowledge we exist! 

petalmoore

VeriteVR, you are most certainly not alone! Most of what I've learned about late effects has been from American websites, and from Facebook groups for survivors, either from particular cancers (mine is Hodgkins lymphoma), or from one or two general survivors' groups. Like you, if I need to seek help with any of these late effects I arm myself withsome written information,  ideally from an evidence-based source, though that's not always possible, to pass on to the doctor. I am constantly educating doctors, and although I get frustrated at how long the awareness-raising is taking to work, it's a fact that on a population level, late effects of long discontinued therapies are very uncommon, simply because survival rates were low. This means that they are rarely encountered by individual doctors, whether in general practice (my husband is a retired GP, and he never came into contact with any patient with similar issues to mine in 30 years of practice) or in NHS hospitals, where the way medicine is organised into specialisms means that interdisciplinary learning and collaboration isn't easy to set up. The result is that the patient ends up being seen by different consultants, with the risk each issue will be treated treated in isolation. There are some mountains to climb. And you're right - we need to push on ... together! Even then it takes  patience and determination, and a group like this one can do a lot to raise even more awareness and help things gather momentum. It's great to meet you and to have one more virtual companion on the path. 

 

VeriteVR

Often have tongue-in-cheek and latest effort is to send a letter to the Minister asking that we are treated as possessing a brain (the NHS dictates to us what we are allowed - in Europe we can often self-refer by ringing directly for an appointment.  No waiting for the 'Choose and Book' backlog.

So I wrote a letter to Matt Hancock the Minister, put it up on aftercancers.com - and surprise, surprise - am still waiting for a reply!!!

colin333

I was reading a local paper and there was a story about a man getting his benifits reduced and was apealing the case He had bowel cancer and had his large bowel and rectum removed(as I have). I have never thought about being “disabled” are we?Is there anyone to advise us, I have a Radar key for using disabled toilets(stoma) But that’s it Are cancer survivors “disabled”?

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