Helen Eadie

Answer · Alex Neil · 29 Oct 2013

The Advisory Committee on Borderline Substances advises prescribers on a UK basis as to which, and in which circumstances, substances such as some foods and toiletries may be regarded as drugs for the treatment of specified conditions, and may thus be prescribed. In this regard it recognises certain staple gluten-free foods as suitable for gluten-sensitive enteropathies. There is no advice in respect of any substances in the context of gluten ataxia.

Answer · Michael Matheson · 29 Oct 2013

We recognise that raising awareness of rare conditions such as gluten ataxia can be very challenging.
We are currently supporting the National Neurological Advisory Group (NNAG) in raising the profile of all neurological conditions within the NHS, the third sector and public awareness.
The NNAGs aim is to drive forward the neurological standards. The standards aim to improve the patient journey from the point of referral into the service and ensure that every patient with a disorder of the nervous system experiences a quality of care that gives confidence to the patient, clinician and carer.
We have also funded the Neurological Alliance of Scotland’s ‘Voices’ programme which enables people with neurological conditions to influence and shape the re-design of neurological services.

Answer · Michael Matheson · 29 Oct 2013

Clinical care of patients with gluten-related neurological disease, including access to the recognised and validated autoantibody assays used to underpin clinical diagnosis, is routinely provided through NHSScotland neurology clinics - through which any further referral for more highly specialised advice and expertise from the NHS across the UK may be accessed

Answer · Michael Matheson · 29 Oct 2013

We want to see everyone with a neurological condition diagnosed as swiftly as possible so that they can access the treatment and support they need.
Gluten ataxia is considered a rare disorder and the range of neurological problems caused by gluten sensitivity is still unclear. Neurologists reviewing people with unexplained ataxia would undertake a range of investigations and tests into possible causes; gluten sensitivity is assessed using a blood test.
The main driver for improvement within neurological services will be implementation of the clinical standards for neurological conditions which state that:
patient with suspected neurological conditions should be assessed by clinicians who specialise in neurological conditions; and
patients should be assessed within timescales dictated by their clinical need.
The National Neurological Advisory Group, has been established with Scottish Government funding to support implementation of the clinical standards.

Answer · Alex Neil · 29 Oct 2013

Within the Scottish Government, the Chief Scientist Office (CSO) has responsibility for encouraging and supporting research into health and healthcare needs in Scotland. CSO has not received any research funding applications on gluten ataxia in the last three years but would welcome applications of a sufficiently high standard from the Scottish research community.

Answer · Michael Matheson · 29 Oct 2013

The Scottish Government is committed to ensuring that everyone with a neurological condition can access the care and support they need.
Ataxia refers to a group of neurological disorders that affect balance, coordination, and speech; there are many different types of ataxia that can affect people in different ways.
Gluten ataxia is considered an exceptionally rare disorder and the range of neurological problems caused by gluten sensitivity is still unclear.
NHS Inform provides a wide range of information about the symptoms, causes and diagnosis of ataxia, and including links to organisations such as Ataxia UK at the following link:
http://www.nhsinform.co.uk/Health-Library/Articles/A/ataxia/introduction
Neurologists seeing patients with unexplained ataxia would undertake a range of investigations and tests into possible causes; gluten sensitivity is assessed using a blood test.
We would expect anyone diagnosed with a disorder linked to gluten sensitivity to be provided with appropriate dietary advice.

Answer · Alex Neil · 28 Oct 2013

The specific information requested is not available centrally.