Parliamentary Question | appropriate treatment and guidance in cases of maladministration | 24 March 2014

Jeremy Browne (Liberal Democrat MP for Taunton Deane) tabled a question that asked the Secretary of State for Health

(1) what steps he has taken to ensure that people with (a) myalgic encephalomyelitis, (b) fibromyalgia and (c) dysphagia receive the treatment they need and help with the cost of treatment;

(2) what guidance his Department has issued on outstanding cases of maladministration surrounding the care of sufferers of myalgic encephalomyelitis, fibromyalgia and dysphagia.

In a written answer supplied on 24 March 2014, Norman Lamb MP (The Minister of State, Department of Health; North Norfolk, Liberal Democrat) replied:

Clinicians or clinical teams, supported by the latest available evidence and drawing on experience and judgment, are responsible for ensuring that the patients in their care get the treatment that is right for them.
 
There is range of guidance on the NHS Clinical Evidence website to support clinicians in the management of patients who have either chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) fibromyalgia, or dysphagia. The National Institute for Health and Care Excellence has also produced a clinical guideline on CFS/ME that sets out best practice in the diagnosis, treatment care and support of this group of patients. However, there is no known pharmacological treatment or cure for either CFS/ME or fibromyalgia, and approaches to the management of patients with these conditions will vary, depending on the severity and type of symptoms. Regarding dysphagia this is usually a complication or symptom of another condition, rather than one that arises in isolation.
 
In terms of help with the cost of treatment, an extensive range of exemptions, based on age, income and medical condition are already in place to support those who may struggle to pay for their prescriptions. Around 90% of prescription items are dispensed free of charge. Prescription Prepayment Certificates (PPCs) are also available for those who have to pay national health service prescription charges and need multiple prescriptions. This is the fifth year the annual certificate, and the third year the three-month certificate have been frozen. Both certificates will remain at £104 and £29.10 respectively this year and next. There is no limit to the number of items that can be obtained through a PPC. The annual certificate benefits anyone needing more than 12 items a year, and the three-month certificate anyone needing more than three items in that three-month period. Through the Healthcare Travel Costs Scheme, those in receipt of qualifying benefits may also be eligible to claim assistance with travel to hospital or other NHS premises for NHS-funded treatment or diagnostic tests.
 
Regarding guidance on outstanding cases of maladministration surrounding the care of patients with CFS/ME, fibromyalgia or dysphagia, if a patient, carer or representative has concerns about the NHS care that they have received, they should first raise the matter with either the NHS organisation concerned or the NHS body that commissioned that care. The NHS Constitution makes it clear that patients have the legal right to:
 
make a complaint;
 
have that complaint investigated; and
 
be given a full and prompt reply.