Our ‘fight’ starts when we finish hospital treatment
Recently, Breast Cancer Care said one in four cancer survivors still face long-term problems arising from treatment. However, when we need help, the NHS often is unable to provide this, or you have problems explaining to your GP what you need.
Finishing treatment, you may find you are still suffering fatigue, pain, itchy skin, high blood pressure and more. You are told you are OK to resume your life. If only you could
This is puzzling. With all the publicity, fund raising and NHS funding, WHY has Britain ended up with the worst post-cancer care in Europe? Why do we still feel abandoned just when we should be jumping for joy?
Authorities, from our National Audit Office to the United Nation’s World Health Organisation say our post-cancer care is some of worst in the developed world. SURVIVORSHIP seems a taboo word, but the NHS and Cancer charities have to STOP faffing around, and face the reality there are thousands of us (some stats say over 600,000) experiencing long term side effects, and not getting help.
Like others, I found it was no use relying on the cancer hierarchy – I had to get on and find solutions myself for my problems. I went to France to get better care, and came back to reality of NHS, where those who questions their treatment are treated as a whistleblower. I kid you not – you have to experience this yourself; reality does the NHS no favours.
Is this because charities, that should be campaigning on our behalf to improve our care can seem more focussed on their own ‘brand awareness’? It is left to us to work out what we need, then ASK – and if we don’t ask, we don’t get.
Politicians running the NHS seem to have a mantra “don’t tell me what I don’t want to know”. Minister of Health Andrew Lansley couldn’t be bothered to improve Bowel Cancer screening rates, saying “it’s not the NHS way”. until he got the disease. Suddenly the NHS came in line with the rest of Europe on screening.
It is often left to patients to sort out what is needed. That means YOU.
Playing the system
Survivors who end up with long-term side effects may have to fight for suitable care; if this happens to you, these are my (sometimes naughty) tips that might help: –
Politicians have set up the way the NHS runs. They can be a shifty lot, so if you need long-term care play them at their own game. EVERY time you see a Consultant, ask them to repeat recommendations of what you need, even if it duplicates what others recommend, you are playing things the NHS way.
Survivors can end up with osteoporosis, lymphoedema, fatigue, weight gain, neuropathy etc., all of which benefit from exercise for treatment. But it needs to be on-going; six sessions are seldom enough.
So ALWAYS get your consultants to include a request for physio and/or hydro in the notes they send to your GP. Remind your GP to refer you (don’t expect them to have time to read your Consultant’s letter). With luck this will mean more sessions than the NHS’s six.
e.g. I needed more hydrotherapy; my physio said that there was no money in the Neurology budget for further sessions, but her face lit up when I asked if we could raid the orthopeadic budget as I had had polio. The answer was YES.
Remember the old proverb “A bird in the hand is worth two in the bush”. If you need medicine or exercise, make sure you have enough. And if that means spare supplies or referrals; you never know when the NHS will withdraw funding, and it can be helpful to have some in reserve. With waiting times extended you may find next time you have a problem, you have an appointment already lined up that can sort this out.
In Europe skin problems as side effects of cancer treatment are well-acknowledged – yet in the UK we get patronising smirks and “it’s your age”. It’s not – so copy Europeans and go for La Roche Posay’s CLINICALLY trialled skincare developed to sort these out. Outbreaks of flaky skin, itching etc. need to be zapped as soon as they appear; there is NO need for this to happen if we use Lipikar Baume, which is prescribed in Europe.
If friends give me lovely skin products, I use them (unless they bring me out in a rash). Having just had a birthday, I got lots of smellies, but hot weather made my skin itchy and flaking. So it was slap on the Skin Balm to stop itching and restore skin.
More information: There is very little on NHS Choices, so click on American website category on right.
Good luck. Get your fighting gloves, boots and everything else on – you will need them!