Dna

Genomes Project launches in October

But judging by a recent conference held in London, this could be a very dis-organised programme..

The 100,000 Genomes Project at the NHS Genomic Medicine Centre (GMC) has recruited its first patient to the programme. The 100,000 Genomes Project aims to transform diagnosis and treatment for patients with cancer and rare diseases and drive forward improvements in cancer care.

In true NHS ‘blowing own trumpet fashion’, it was announced that the NHS is the world leader in this field.  I wonder why I had to access treatment abroad when I went down this path?

When I began to suspect the drugs I was being treated with were causing as many problems as they were supposedly treating, ten years ago, when I wanted to use this new science to try and find out why I had gone blind in one eye,sprung bloody blisters all over my body, etc., my consultant had to send my blood tests to USA, because there was nothing in UK. Later friends had their tests sent to Belgium, as this was cheaper.  Now, US and European patients access these tests as a matter of course.  Many are even tested before they are started on some drugs, in case something in their genes might react unfavourably – as happened in my case.

So these new tests could prevent unexplained and sometimes life-changing side effects of drugs.

WHAT’S IT ALL ABOUT?

Genetics

Genomics

Study of inherited traits, such as hair or eye color, that are passed from one generation to the next through genes. Study of the activity and interaction of certain genes in the body, including their role in certain diseases.
Your risk for certain cancers can be inherited, or passed through your genes. Once you have cancer, the activity and interaction of certain genes in your tumor tissue influences the behavior of your tumor, including how likely it is to grow and spread.
    HOW CAN YOU BE INVOLVED?
    Discussions are being held in following areas on these dates.  If you are interested you can apply and it’s FREE :
  • 19 April 18          Birmingham (Birmingham Botanical Gardens, Westbourne Rd, Edgbaston, B15 3TR)
  • 16 May  18          Bristol (DoubleTree by Hilton, Redcliffe Way, BS1 6NJ)
  • 18 May  18          Leeds (Hilton Leeds City, Neville Street, LS1 4BX)

Details and registration: Free of charge. Places are limited. Click on the links above to register. If you have any questions please get in touch at england.genomics@nhs.net.

WHY GET INVOLVED?

It is very apparent that the current  ‘one-size-fits-all and ‘discuss issues in Clinic’ does not benefit the 25% of patients who end up with chronic long-term conditions from cancer treatment.  When I began to produce frightening side effects, the oncologists treating me should immediately have started tests, instead of trying to pooh pooh my symptoms.

Instead, it was left to me.  I was convinced that these horrible symptoms were due to the drugs I was on, even thought doctors tried to convince me they were “due to your age” and other stupid statements. It was left to me to search out Dr. James Mackay (at that time the only expert in UK) and he carried out tests.  Eventually, he called a halt to testing,d saying it was bolting the stable door, etc.,and throwing my money away. Apparently the hospital should have called a halt to any further treatment, until I had been tested.  Instead they  went on to change the drugs I was given, without checking what was causing side effects, and  I now have 12 ‘co-morbidities’.   This is costing the NHS a fortune to treat – serve them right.

When NHS England decide to trumpet this programme, the London event run to announce the launch in October was full of NHS speakers making everyone present play games such as devising the WORST programme (lots of suggestions and laughter as you can imagine – but why do I have a horrible suspicion that this might just turn out to be what happens?).  I arrived 25 minutes late (it took that long to activate disabled access) but it didn’t seem as if anyone who had been a patient was involved. and although speakers kept repeating the mantra of involving patients, none of the tables where I sat were the slightest bit interested in what patients had to say.

I got the suspicion that it was a day out with free transport, a free lunch, and half the attendees had disappeared by the start of the afternoon session.  Shopping in London perhaps?

Change the system

To ensure this programme gets properly on-stream, anyone who is interested in developing cutting edge personalised treatment, or has actually gone abroad to get these tests,  should go to one of the events planned and make their voice heard. If mothers are anxious that children might not be given this cutting-edge technology, if the worst happens, their voice should be heard.

in London, the event showed how NHS England doesn’t grasp what is happening to patients.  Although speakers kept repeating that patients should be involved in setting up the programme, other patients were saying no-one was listening to them. Playing the games that today’s event organisers deem appropriate is no way to replace serious discussion. Not one patient who had been involved, or even benefited, was asked to speak.

One of those who left early was a representative of Europa Donna; their Barcelona Conference earlier this year had had several presentations, and you would have thought NHS England would have invited one of their expert speakers – but no, NHS is too arrogant to learn from others.

To ensure this programme rolls out as smoothly and quickly as possible, the service desperately needs in-put from non-political but expert attendees.  My contribution, which needed a lot of lung to get through, was that there should be a template to show patients what they have a right to expect when the programme is rolled out.  ‘Expert’ patients can then chivvy GPs, their Oncologists and hospital if they have done their research, and think they might benefit.

Otherwise this will just be another ‘initiative’, which few who could benefit from can actually access.

Patient needs risk being ignored;  someone from the GMC told me that patients didn’t know what to ask for!

It is no good NHS England saying these tests will be available come October. We all know the NHS post-code lottery means this won’t happen – UNLESS informed patients can go to the NHS, ask what they have a right to expect, and use this to demand better and more targeted personalised care.

Dna

 

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