Time to UNITE – for results

A couple of days ago I was talking with the Chair of the Scottish Post Polio Network. During our chat the subject of specialist care for polio Survivors not just in Scotland but all over Europe raised its head. It came to me why are polio Survivors treated differently in community care to others with neuro degenerative conditions.

Those who are experiencing symptoms and problems associated with conditions such as Multiple Sclerosis, Parkinson’s, Motor Neuron Disease and others all have specialist nurse care practitioners either provided by health services or through their own condition specific support groups. For example in the United Kingdom, the Parkinson Disease Association over many years ran a campaign for specialist nurses in areas all over the country to look after members of that group. The same has occurred in other countries, in some the initial funding has been put up by the support group and then the ongoing costs have been borne by the State. This is the case in Germany, Australia, parts of America and indeed in most countries which have a State funded health systems in whole or part.

It came to me, although it should have been obvious, that no polio Survivor Support Group, to the best of my knowledge, has ever campaigned for or thought of recruiting or providing specialist nurses to work in the community supporting polio Survivors. Some may say its a matter of the sheer number of polio Survivors, but that argument does not hold true when it can be shown that there are just as many who are experiencing Parkinson’s. Why has no group ever gone down the line of nurse practitioners for their membership?

The answer probably is down to pure economics. In the case of other neuro degenerative conditions that have been mentioned in this piece, there are vested interests amongst the pharmaceutical companies because of research and the potential profits which will be earned for drugs to treat conditions. Regrettably, to date no pharma company has ever come up with a viable treatment for polio Survivors or even those who go on to develop Post Polio Syndrome. It is through those vested interest that the other neurological charities have been able to pump fund the campaigns and the trials to prove the worth of nurse practitioners in their particular area of expertise.

Once again it regrettably shows that polio Survivors are very much the forgotten or Cinderella group of the degenerative neurological family. Added to this with the lack of chronic polio cases in the first world the cohort of patients is aging and time will take its toll and we will all “die out”. Considering the sheer numbers around Europe, about 1.2 million polio Survivors, surely the support groups should get together and actively campaign for specialist nurses to look after their members and others affected by polio.

PoPSyCLE can provide those nurses with the practical information, training and resources to run successful clinics and outreach resources. The demand from polio Survivors themselves is there. However, polio Survivors need to raise their united voice to demand action for their provision. Silence to State and Statutory Authorities equals acquiescence and acceptance of the status quo. Polio Survivors are seen as the silent majority. But, read the Facebook pages and twitter accounts of the people themselves and you will see a completely different view point.

That view point needs to be brought to public and governmental attention and the only people who can do that are polio Survivors and their support groups. They are the only ones who can help us help them. So, advocate, ask questions, make demands, so that your life and that of other polio Survivors has a meaning and can be lived with quality and independence.

Over to you, stand up and be counted.

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Author: popsycle

Arriving in this world in 1948 I contracted polio within 18 months that has left me with total paralysis of both legs, lower torso and partial in right arm. I had a successful business career. Over the years I have seen the problems faced by polio Survivors, as well as those who develop Post-polio Syndrome and through the PoPSyCLE project am determined to ensure that polio Survivors wherever they be can access the care, treatment and management for their condition so they can live a life with quality and independence.

One thought on “Time to UNITE – for results”

  1. Excellent idea John as you know from speaking to George SPPN are working with Scottish Government to push forward the need for specialised nurses for polio survivors with PPS and note your support keep us updated with any further advice on this cheers Helene hope you and Mary are well


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