Houses of Parliament Debate – follow up

8th March 2017

Narcolepsy UK will be relentless in their pursuit of all of the issues raised in Parliament today.

Huge thanks from us all to the Forbes family for securing the assistance of their M.P. today in both a Westminster Hall debate and Prime Minister’s Questions in the House of Commons.

Whilst our role is, by necessity, bipartisan we have written to Tracy Brabin (Batley and Spen) (Lab) to say thank you for securing both of her slots today and choosing to support the family in what is a very difficult time for them.

On International Women’s Day, we also congratulated her on choosing a very worthy and extremely difficult and controversial subject for her first Westminster Hall debate & PMQ’s – a “double”.

We have also expressed our thanks to the following M.P.’s both for attending this debate and their continued support in these issues. Julian Sturdy (York Outer) (Cons) and Jim Shannon (Strangford) (DUP). We have copied our thanks to Stephen Twigg (Liverpool, West Derby) (Lab) who we understand was unavailable today or would have been present to represent his constituent.

In summary

We welcome the confirmation of the following three points – 

  1. That the recent Court of Appeal ruling against the Dept. of Work & Pensions (DWP) will not be appealed further. We will continue to support everyone concerned in their claim that narcolepsy is at least 60% disabling according to the industrial injuries compensation scale specified within the Vaccine Damage Payment Act 1979 and note that future disability will also be taken into account.
  2. That medication, specifically sodium oxybate will remain available until all personal injury claims are settled. This scheme had previously only been confirmed to run for an additional year. Ex Gratia Xyrem Scheme Summary.pdf
  3. That the Parliamentary Under-Secretary of State for Health (Nicola Blackwood) will look into the wider issue of the post code lottery that all people with narcolepsy face when seeking treatment with sodium oxybate.

Not unexpected disappointments –

That we should accept that the Vaccine Damage Payment Scheme (VDPS) should not be considered in isolation as it is part of a much wider package of care and support that is available to people with disabilities we would accept if that care and support were truly available. However, the wider package of care and support is something that Narcolepsy UK are stretched to assist claimants with narcolepsy through each and every day, several times a day. The reality of this statement is that we see individuals with lifelong Disability Living Allowance (DLA) awards being transferred to the Personal Independence Payment (PIP) and receiving zero points in a cruel and cold-hearted attempt by the DWP to simply cut-costs, irrespective of disability.

We find this practice to be abhorrent and wholly without justification and were not surprised but extremely disappointed to hear this view also supported by Prime Minister Theresa May in her response to Tracy Brabin’s question during PMQ’s today.

Going forward, we have made it clear to all parties that we are happy to work with any interested M.P’s to progress the issues outlined today as we remain extremely determined to see these resolved, particularly the issue concerning Lucas Carleton, Stephen Twigg’s constituent (and potentially 3 other individuals that we are aware of) for which no apology or resolution was made today. 

That the Vaccine Damage Payment Act 1979 is based on specific diseases is understandable. To openly use this excuse as a reason for not responding to the needs of people vaccinated with the Pandemrix vaccine after the “pandemic” had subsided based on the fact that it was given for seasonal-flu is to ignore the fact that at this point, there was definite awareness in the medical community that there was a real risk of narcolepsy as a result of this vaccination for an element of the population.

We will continue to request that the Act be amended to include cover for H1N1 for anyone vaccinated through to mid 2011, when vaccinations ceased. This requires a simple and very specific amendment to the Act that is well within the gift of Parliament.

Click here to see the initial transcript of the debate.

Click here to see the question from Tracy Brabin MP at Prime Minister’s Questions following the debate.