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Issue latest Cancer Experience Registry® (CER)

A recently commissioned survey by the Cancer Support Community of America has some interesting findings, which show we in Britain are not alone with our survivorship problems.

Their Cancer Experience Registry is based in America, poviding an opportunity for any adult touched by cancer to share their experience so that others may learn. They recently issued online survey captured several parts of the patient and caregiver experience including physical, emotional, social, practical, and financial aspects of cancer.  Much of the findings echoed what is experienced in other countries, proving that cancer survivors can get a raw deal wherever they live.

Although the current CER was organised in America, anyone registered in other countries could take part, and it is interesting how the results are appropriate for cancer survivors around the world.

The 2020 CER describes general findings among patients with any cancer type, findings among patients living with specific cancers, and findings among caregivers. Below are some key highlights.

As the report is about living with cancer, what is particularly shocking is that STILL, today, the report found 

◊ 4 out of 10 felt inadequately prepared to manage side effects of treatment

and

◊ 4 out of 10 did not recall receiving information about long- term side effects of treatment

I wonder what a similar survey in the UK might throw up?  Perhaps those of us who experience massive problems with long-term side effects will now have courage to ask NHS staff NOT to brush aside our long-term problems. If the Americans acknowledge they have major problems, with 40% feeling they weren’t helped with managing side effects, this means we are not alone.

Surprisingly, only 10% postponed getting prescriptions to reduce cost, yet we in UK constantly are told horror stories about US healthcare costs.  However, 70% reported that no one from their health care team talked to them about the cost of their care;  here in UK I found that NHS doctors blithely tell me ‘go private’, with no understanding of costs. I found it seemed to be assumed that I would be expected to pay something if I wanted the best treatment.

Talking to other patients, I found they too had been ‘offered’ private treatment for certain aspects as a matter of course.  And we all swop stories of best care at reasonable costs!

Consequently, if I want to have follow-up appointments to re-assure myself that aches and twinges are NOT cancer returning, I have to pay privately – or am left to bite my fingernails alone  Talking to others, it is surprising how many also pay out for this annual reassurance.

◊ 1 out of 3 depleted savings or used money from retirement to cover treatment costs

What concerns me in UK is how many NHS patients admit to using savings etc. to cover some treatment costs.  At a focus group of dis-advantaged cancer survivors, convened by the Mayor of London, 21 out of 30 admitted to having

  • spent ‘life-savings’,
  • or ‘extended mortgage’
  • or ‘borrowed from family’ etc.

to pay for cancer treatment they couldn’t get on NHS, or would have had to wait too long.

Conclusion

If you are one of those survivors who seems to have ended up with all sorts of on-going health problems after cancer, you are NOT alone.  And the CER report is proof.

More info:
Report : www.cancersupportcommunity.org

mail: research@cancersupportcommunity.org

Join the Cancer Experience Registry

 

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