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De-mystifying NICE- advice for APCP members on the National Institute of Clinical Excellence.

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What does NICE do?

NICE exists to improve outcomes for people using the NHS and other public health and social care services by

  • Producing evidence-based guidance and advice
  • Developing quality standards for those providing and commissioning health, public health and social care services.

 Why do I need to know about it and/or get involved?

NICE guidance affects our everyday practice as physiotherapists. Commissioners of health services take it seriously and may change services according to the guidance. If we want to provide evidence and highlight the role of physiotherapy within paediatrics, we need to take the opportunities to have our say. You might think that you as an individual therapist you could have minimal influence, but physiotherapists can and do influence and change NICE guidance.

 But isn’t it mainly about drug treatments?

Guidance can include any type of health care, equipment, pharmacology or device ranging from Physical activity in Children, Bronchiolitis diagnosis and management, Juvenile Chronic arthritis, Selective dorsal rhizotomy, Developmental follow up, the Molli suit and Asthma medication.

 How can I use the information NICE provides in guidelines and recommendations?

There are many ways, for example,

  • Deciding on which intervention or the optimal dose to use for a specific condition you treat: Best evidence is provided in guidance on different conditions and guidance on specific interventions. For example, within Bronchiolitis guidelines, it specifies that physiotherapy is not indicated. However, assessment by a physiotherapist may be necessary “children who have relevant comorbidities (for example spinal muscular atrophy, severe tracheomalacia) when there may be additional difficulty clearing secretions”.  So this could both help prevent unnecessary referral for physiotherapy, but also support the need for chest physiotherapy services for children with specific conditions.
  •  Planning Clinical Audit Using the quality standards for a condition to audit your services. For example in the guideline:’ Transition from child to adult services’ the NICE Quality statement 4: introduction to adult services: states that - Young people who will move from children's to adults' services should meet a practitioner from each adults' service they will move to before they transfer. Clinical audit could therefore include a measurement of how many children within a physiotherapy children’s service who are going through transition, meet an adult service physiotherapist prior to transition.
  •  Supporting a case for new or increased physiotherapy services: Recommendations are given for access to different health services within guidelines. For example the following recommendation might be used to support the need for a physiotherapy service: in the  Neonatal Specialist Care quality standard, NICE recommends: Skilled and multidisciplinary staff :Evidence of local arrangements to provide a multidisciplinary service, trained and competent in the care of neonates, that has access to: specialist neonatal physiotherapists.

How can people be involved?

  • Attend a workshop to discuss the scope of future guidelines
  • Join a committee to develop guidance on a topic for which you have experience and skills,
  • Contribute evidence when there is a ‘call for evidence’. This is a situation where NICE think there may be additional important evidence on a topic unlikely to be found by electronic searching alone, e.g. patient perspectives
  • Comment on the draft scope for a future guideline – to affect what will be included in the guideline
  • Comment on draft or updated guidance –which must be submitted on the NICE reply form. For example, how easy are recommendations to understand, how useful is the information, is anything missing, etc.
  • Inform NICE if you think a guideline might need updating
  • Help to put guidelines into practice, e.g. hold an  in service training event for therapists, set new quality standards for your service in line with NICE guidelines

 Who can be involved in NICE?     

  • Members of stakeholder organisations (e.g. APCP) (see section on stakeholders)
  • Individual members of the public (e.g. parent of a child with a health condition)
  • Individual practitioners

The level of involvement differs between these groups.

Stakeholder members can be involved in all of the activities: scoping workshops, as members of committees developing guidance, submitting comments etc.

Individual members of the public can participate in committees as lay members if they have personal experience in the topic (condition, treatment, equipment etc.).

Individual practitioners may also be able to give evidence to the Committee as expert witnesses on some topics or be invited to be specialist commentators regarding a new piece of equipment or device with which they have experience.

What is a NICE stakeholder?

An organisation that has registered with NICE to say they are interested in getting involved in developing guidelines on particular topics.

What sort of organisations could be stakeholders?

  • Public organisations: national patient, service user, carer and community organisations that represent the interests of people whose health or care is covered by the guideline, and local Healthwatch organisations, e.g. SCOPE.
  • Professional organisations: national organisations that represent the people working in health and social care who provide the services described in the guideline, e.g. APCP, British Association of Bobath trained therapists, Cerebra,
  • Commercial enterprises and companies: manufacturers of medicines, devices, or other products relevant to the guideline, e.g. standing frames, asthma inhalers etc.
  • Providers and commissioners of health and social care services, Government organisations, and research organisations in the UK.

 

I am a member of a special interest group or patient self-help group – how  do I register the group as a stakeholder?

To register your organisation, you need to complete the stakeholder registration form on the NICE website.

How does APCP get involved in NICE?

Keep members up to date with

  • new NICE guidelines and important evidence by advertising and endorsing key NICE guidelines in their newsletters and other publications.
  • Helping members and key specialist physiotherapists contribute by informing them what guidance is being developed, when there are consultations, calls for evidence and comments

How have individual therapists been involved in NICE?

  • Physiotherapists attended a Scoping workshop for the NICE guidance for Adults with cerebral palsy. As a result the scope of the guidance was expanded to include issues related to secondary neurological conditions such as cervical myelopathy
  • An Occupational Therapist with extensive skills with children with cerebral palsy was encouraged by colleagues to join the panel working on the guideline for Cerebral palsy in under 25s. The therapist was able to ensure that issues such as visual impairment and perceptual difficulties were included.
  • APCP members, (as part of that stakeholder organisation) sent comments on the draft guidance for the End of life care for infants, children and young people, and ensured that neonates would be included as a specific group with different needs. This also highlighted the lack of evidence in this area and that led to a NICE research recommendation into ‘ the impact timely perinatal palliative care has on the experience of bereaved parents.’ NICE research recommendations will often attract research funding for future studies.
  • A physiotherapist was recruited to comment on the MOLLI suit for reducing spasticity in cerebral palsy and was able to give specific recommendations regarding it’s use.

How do I know when there are relevant scoping workshops and panels that I might join?

  • Sign up for the email NICE newsletter and alerts on their website – this tells you about future and current guidelines in development, scoping workshops, committee vacancies, requests for comments on guidance, reviews of guidance, etc.
  • Look on the NICE website for adverts:  https://www.nice.org.uk/get-involved/join-a-committee
  • APCP newsletters highlight key opportunities with NICE, and alert members when guidelines are issued with requests for comments.

What is happening right now with NICE guidance?

 

  • Asthma and guidelines have just been published this October, so you can review the current best evidence for diagnosis and monitoring, management and patient experience. https://pathways.nice.org.uk/pathways/asthma
  • NICE are now developing quality standards which will be then be open for consultation – date to be confirmed.
  • Cystic Fibrosis guidelines have just been published this October, so you can review the current best evidence for diagnosis and monitoring, management and patient experience. https://pathways.nice.org.uk/pathways/cystic-fibrosis
  • Draft Quality standards for cystic fibrosis will be published and be open for consultation from 15th December 2017 to 19th January 2018. APCP is a stakeholder and if you want to add some comments, information will follow in the next newsletter on how to do this.              
  • Developmental follow-up of children and young people born preterm guidelines have just been published this October, so you can review the current best evidence for diagnosis and monitoring, management and patient experience.
  • https://pathways.nice.org.uk/pathways/developmental-follow-up-of-children-and-young-people-born-preterm
  • Draft Quality standards for Developmental Follow-up will be published and be open for consultation from 15th December 2017 to 19th January 2018. APCP is a stakeholder and if you want to add some comments, information will follow in the next newsletter on how to do this.              

 

 

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