The Humble Petition of residents of North East Somerset,
Sheweth,
That the Petitioners are concerned about the wellbeing of Alison Jukes, who was diagnosed with Gastroparesis in January 2012; further that the Petitioners believe that a possible treatment exists for this condition—gastric electrical stimulation—and a number of Gastroparesis sufferers in Britain have successfully received it; further that Alison has been denied the operation and her appeal has also been turned down; further that the Petitioners believe without this operation, Alison will be fed via a tube every day for the rest of her life and the Petitioners believe that eligibility for this treatment should not vary by location.
Wherefore your Petitioners pray that your Honourable House urges the Department of Health to look into the consistency of the availability of gastric electrical stimulation across different Primary Care Trusts.
And your Petitioners, as in duty bound, will ever pray, &c.—[Presented by Jacob Rees-Mogg, Official Report, 19 November 2012; Vol. 553, c. 413 .]
[P001132]
Observations from the Secretary of State for Health, received 11 January 2013:
The Government are sorry to hear that Mrs Jukes has gastroparesis and realises what an important issue the availability of effective treatments is for her, her friends and family.
Any funding decisions in the absence of positive National Institute for Health and Clinical Excellence (NICE) technology appraisal guidance are for NHS organisations to make based on an assessment of the available evidence and on the individual patient’s clinical circumstances.
The NHS Constitution states that patients have the right to expect local decisions on the funding of drugs and treatments
“to be made rationally following a proper consideration of the evidence”.
If the local NHS organisation decides not to fund a particular treatment then it should explain that decision.
To underpin this right, the Department of Health has issued a set of core principles to inform the way in which NHS organisations make decisions about funding drugs and treatments. NHS organisations are required to have in place clear and transparent arrangements for local decision-making on funding of treatments and for considering exceptional funding requests. In addition, the Department has published good practice guidance about the processes they should have in place to make decisions about funding drugs and handling exceptional cases. The guidance can be accessed on the National Prescribing Centre’s legacy website at: www.npc.co.uk.
NICE is the independent organisation responsible for providing authoritative, evidence-based guidance to the NHS on the most effective ways to prevent, diagnose and treat disease and ill health, reducing inequalities and variation.
NICE issued interventional procedures guidance on the use of gastroelectrical stimulation for gastroparesis in December 2004, which stated that the evidence on the safety and efficacy of the procedure did not appear adequate to support its use without special arrangements for consent and for audit or research. NICE reviewed the need to update the guidance in 2009 and concluded that it did not need to be updated at that time, however NICE will consider any new evidence submitted to it on the procedure. Further information is available at: http://guidance.nice.org.uk/IPG103.
NICE’s interventional procedures guidance assesses the efficacy and safety of interventional procedures, with the aim of protecting patients and helping clinicians, healthcare organisations and the NHS to introduce procedures appropriately.