NICE have released for consultation a new draft guideline on the recognition and referral of suspected neurological conditions.
The clinical guideline, which is due for publication in January 2018, outlines to healthcare professionals, who may have never encountered a particular condition before, the steps they should take to make an accurate referral and bring in the required specialist services.
Muscular dystrophy and neuromuscular conditions are highlighted throughout the draft guideline, with a focus on identifying muscle weakness in children and adults.
Duchenne featured in the guideline
A specific section of the guideline (pages 132-135) refers to the recognition and referral for diagnosis of Duchenne muscular dystrophy, including comments on:
- the creatine kinase (CK) test to identify the condition
- need for counselling and support during and after the diagnostic process
- referral onto specialist paediatric services
- importance of respiratory support
- use of steroids
Input into the guideline by Muscular Dystrophy UK
Before work on the guideline began, Muscular Dystrophy UK was invited to make comments on the scope of the guideline.
We emphasised the vital role which GPs play in the referral process, and promoted the GP online training module which we have developed in conjunction with the Royal College of General Practitioners.
We also conveyed the findings from our 2015 survey of experiences of the diagnosis process and highlighted the importance of strong links with specialist muscle centres across the country.
The development of clinical guidelines to support people with muscle-wasting conditions was a recommendation of the All Party Parliamentary Group for Muscular Dystrophy’s ‘Impact of NHS Reforms’ report in 2015, and Muscular Dystrophy UK put pressure on NICE to produce a guideline in which muscle-wasting conditions would be featured.
NICE Centre for Guidelines Director, Professor Mark Baker, commented ahead of the development of the guideline:
Muscular Dystrophy UK will have the opportunity as a stakeholder to work with us to develop our recommendations, and the creation of a service infrastructure will be important to support the implementation of the guideline.
How to get involved and share your views
Muscular Dystrophy UK will be submitting a response to the consultation ahead of the deadline on 19 September.
We would be grateful for your views and experiences on the following issues which we can incorporate into our consultation response:
- counselling and psychological support at and after diagnosis
- referral process from GP to specialist services during diagnosis
- GP knowledge and awareness of muscle-wasting conditions
To share your views and experiences, please email Jonathan Kingsley at firstname.lastname@example.org . Please specify in your email if you would like your comments to be treated anonymously.
We also plan to hold a Facebook Q&A session about the NICE guideline in the week beginning 4 September – more details to follow in due course.