2011/12 PBR Exclusions – Funding Application for Riluzole for the treatment of Motor Neurone Disease (last updated: 19/05/11)
Patient NHS No: Trust: GP Name:
Patient Hospital No:
Patient initials & DoB: Consultant Making GP code /
Request: Practice code:
Confirm patient status: NHS / Private / Overseas* Consultant Contact GP Post code:
(* select 1 option) Details:
Please indicate whether patient meets the following NICE criteria Please tick Only fully completed forms will be accepted by PCTs for
1. Does patient have Motor Neurone Disease (MND)? If the answer to any of these questions is NO, please
Yes No consider if there are patient specific exceptional clinical
circumstances demonstrated. If so, a full individual
funding request (IFR) form will need to be completed.
2. Does patient have Amylotropic Lateral Sclerosis (ALS) form of MND? Yes No This may be obtained from the named contact at the
relevant PCT/Trust. Please refer to the individual PCT
IFR policy for further details.
3. Is this patient an adult (i.e. aged 18 years or older)? Yes No Contact details:
Form completed by:
4. Will a neurological specialist with expertise in the management of MND initiate Email:
Do you intend to seek shared care prescribing arrangements with the GP, once the Date of completion:
patient is stabilised. Yes No (see also note below*)
If yes, please state anticipated period when prescriptions will be provided from the
Additional Information (for PCT use only):
5. What is acquisition cost of drug to be prescribed by Trust including VAT (if £ per
(delete as appropriate)
FOR PCT USE ONLY
until discontinuation OR
until prescribing is undertaken by the GP under a shared care prescribing arrangement (see note below *) Yes No
*Note that shared care prescribing would only apply to PCTs who have agreed to such arrangements.
Participating PCTs: Barking and Dagenham; Barnet; Brent; Camden; City and Hackney; Croydon; Ealing; Enfield; Hammersmith&Fulham; Haringey; Harrow; Havering; Hillingdon;
Hounslow; Islington; Kensington&Chelsea; Kingston; Newham; Redbridge; Richmond; Sutton&Merton; Surrey; Tower Hamlets; Waltham Forest; Wandsworth; Westminster.
This form should be returned to the named contact at the relevant PCT
Guidance on the Use of Riluzole (Rilutek) for the Treatment of Motor Neurone Disease (NICE TA 20: January 2001)
1.1 Riluzole is recommended for the treatment of individuals with the amyotrophic lateral sclerosis (ALS) form of Motor Neurone Disease
1.2 Riluzole therapy should be initiated by a neurological specialist with expertise in the management of MND. Routine supervision of therapy
should be managed by locally agreed shared care protocols undertaken by general practitioners.
The term ‘Motor Neurone Disease’ is used to describe variants of the disease – namely progressive muscular atrophy (PMA) and
amyotrophic lateral sclerosis (ALS) which includes Progressive Bulbar Palsy (PBP). ALS, which is characterised by both upper and lower motor
neurone signs, is the most common form of MND, accounting for 65% to 85% of all cases. Adult onset MND usually starts insidiously with symptoms
and signs including stumbling, foot drop, weakened grip, slurred speech, cramp, muscle wasting, twitching and tiredness. Other symptoms of MND
include muscle stiffness, paralysis, in-coordination and impaired speech, swallowing and breathing.
Most individuals die from ventilatory failure, resulting from progressive weakness and wasting of limb, respiratory and bulbar muscles within
approximately 3 years of the onset of symptoms.
This NICE Technology Appraisal refers to ALS specifically in accordance with the terminology used in the current product license for riluzole.
Patients with the progressive muscular atrophy (PMA) form of Motor Neurone Disease are excluded from NICE guidance and
local funding arrangements.