Multimorbidity – NICE guidance scoping consultation

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Get involved in the NICE scoping consultation on multimorbidities.

Today’s post is a little different in nature – rather than bringing you the evidence, we are asking you to get involved in helping to shape it.

NICE are in the process of defining the scope of their guidelines on multimorbidity (a combination of two or more diseases or long-term conditions, where none of the conditions dominates).

They are asking for comments on this now. Multimorbidity was a key issue for many people whose deaths were reviewed by the Confidential Inquiry into premature deaths of people with learning disabilities, and one of the recommendations of the Inquiry was for NICE Guidelines to take account of multimorbidity.

However, the draft scope of the NICE guidelines on multimorbidity explicitly excludes ‘the identification and management of specific morbidities associated with learning disabilities (for example respiratory problems).’ (section 4.3.2a).

It also specifically excludes ‘the management and organisation of care for people with learning disabilities and people with dementia’. (Section 4.3.2b). I am particularly concerned about this for a number of reasons:

  • people with learning disabilities are being treated very differently from other patient groups
  • respiratory problems should be no more associated with people with learning disabilities than the general population, older people, people with dementia etc – the fact that people with learning disabilities die from this is more related to amenable factors related to the provision of healthcare

There are some conditions that ARE associated with people with learning disabilities (cardiac problems or early onset dementia in some people with Down’s Syndrome, for example) but why specifically exclude these when there are some conditions for example that are associated with people with diabetes (vascular problems leading to visual problems or amputation for example) etc. yet these are not excluded.

  • management and organisation of care for people with learning disabilities and people with dementia is excluded, but management and organisation of care for other vulnerable patient groups is not (e.g. people with mental health support needs etc.) No rationale is given for this.

I would urge you please to respond to the consultation to require that it includes all aspects of multimorbidity for people with learning disabilities – and that it needs to do so from an equalities perspective.

To send in comments you need to register as a stakeholder.


You then need to fill in their proforma response form.

If you don’t want to do this, do send you comments to me by the end of August and I will include them in the response from the Confidential Inquiry team.

However, I would urge you to please do send in comments yourself as a registered stakeholder because the more comments they have back on this the better. The guideline development group is also looking for patient/carer/relative members to be members of the group, so please do consider this too. It might be a good opportunity to add pressure for the need to include people with learning disabilities.

Please could you also circulate this as widely as possible?
Many thanks

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Pauline Heslop

Dr Pauline Heslop is a Reader in Intellectual Disabilities Research within the School for Policy Studies at the University of Bristol. She is a qualified nurse, and has a background of working with children and young people in a variety of settings in the UK and overseas. She joined the Norah Fry Research Centre (which aims to make a positive difference to the lives of disabled children, young people and adults through social, educational and policy-related research) in 1999. Since working at the Norah Fry Research Centre, Pauline has completed research into a range of health and care-related issues. She led the Confidential Inquiry into Premature Deaths in People with Learning Disabilities (CIPOLD) from 2010-2013 which identified potentially modifiable factors associated with premature deaths in people with learning disabilities. She is now the Programme Manager for the Learning Disabilities Mortality Review (LeDeR) Programme.

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