Pink ribbon.svgAfter all the talk and promises

Breast Cancer patients still need to campaign

It’s time for ACTION

In the 1990s people didn’t talk about Breast Cancer, until a grass-roots movement spread across the United States bringing the condition out into the open. Millions of women made waves and campaigned with ‘pink ribbons’ highlighting what was needed to care for us

After all the campaigning, we can still find a shortage of practical support and help.  Unless we make a fuss, it’s likely there will be more sneaky cuts to services. More and more the NHS leaves it to charities such as Breast Cancer Care to provide what we need.  It’s time to revive that 1990s campaigning spirit and demand what we are entitled to.

We need to campalgn to make the NHS aware that Breast Cancer treatment doesn’t end when we finish treatment; but continues for many years as long-term side effects from drugs kicks in.

It’s about time there was proper provision to support us.  We shouldn’t let the NHS abandon us and have to work out ourselves how to cope with long-term side effects.  They pumped the drugs into us, now they should help us deal with consequences.  We should realise that even one email to a decision-maker pointing out where improvements can be made, can be a powerful force if added to others.

As a start, you can contact your MP the moment you notice your services are cut: https://www.parliament.uk/get-involved/contact-an-mp-or-lord/

NHS relies heavily on volunteers and charity to provide what’s needed

HomeA recent report from Breast Cancer Care (BCC) highlights the shocking state of ignorance over our condition :

  • Nearly half of us aren’t told that cancer could come back
  • One third of us still have pain
  • Only half the NHS Hospital Trusts offer support – rest offer NOTHING.
  • NHS England promises every person with cancer will have access to elements of a Recovery Package by 2020  (How big of them).  Why are we having to wait?  We need help NOW.
  • We are told to get support from our GP, but very few understand our condition
  • Am glad to say Scotland and Wales are a tad more ambitious.

Dealing with long-term conditions often means having to ask charities to help with our problems.  Charities should be there to provide moral support, not have to help us pay if we need aids in the home to deal with disabilities, lymphoedema treatment, etc.

But in the meantime we rely on charities to provide us with the after-care we need.

Breast Cancer Care Moving Forward Course

On excellent ‘aid’ is the course BCC provides called Moving Forward.  This is an introduction on handling our numerous problems, major and minor.

Click on https://www.youtube.com/watch?v=3JBuViPdR3M&feature=youtu.be

which shows you some people who have taken part in these courses, and what they felt about the experience.  As a participant, the most useful thing for me was to learn that I wasn’t alone – it is normal to worry about long term side effects, and just because I had them didn’t mean that I hadn’t followed the treatment path seriously.  It wasn’t my fault that I had landed up with long-term side effects,  just my bad luck – and it can happen to anybody.

More details:  campaigns@breastcancercare.org.uk 

Tel  Gunes Kalkan  0207-960 3447

When you need more help – Go Campaigning

Neither BCC, other charities nor the NHS can currently offer enough support to those of us who have ended up with complex problems.  So it’s time for us to campaign for better care.  Follow the feisty ladies in the USA who first campaigned for Breast Cancer awareness, and ensure cancer survivors get a slice of the extra funds promised the NHS.

Unless we stand up and ask for what we need, we ain’t gonna get it.  With so many people out there clamouring for a slice, we need to make sure we are heard. Keeping quiet isn’t an option.

Pointers to help campaigning

Think what YOU need.  Is it

  • Better Lymphoedema care?
  • Help with a condition,  e.g. Neuropathy, Osteoporosis, skin care etc?
  • What check-ups we need – and how often?
  • Dealing with consequences of your treatment

KISS  (Keep it simple, stupid).  Others tend go look at the ‘bigger picture’ and get lost with too much information being offered.  Set a target and Go for it.

I realised if I wanted better Lypmphoedema treatment the official line was use compression garments, but these didn’t work for me.  So I contacted my MEP in Brussels and he got me £2,000 worth of treatment paid for by the NHS in a private hospital.  Today I would contact my MP and get him to write on my behalf to the Minister of Health – you are entitled to do this.

Campaigers use email, telephone, write letters – whatever is easiest.  Set single targets and don’t give in!  I went on to use the Lymphoedema template to target other organisations for pain relief, etc.  Sometimes it worked – sometimes not, but mostly I got what I needed, and wrote about this on this website.

Keep to ONE ‘ask’ at a time. Don’t be tempted to add ‘and another thing…’  Eventually you WILL make authorities realise that there is a huge, silent army of us – and they’d better do something to help us! 

 

 

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