NICE ME/CFS draft guideline: provide help to access services


The draft NICE guideline is open for consultation until December 22nd 2020.

Contact the helpline or use the contact form on this website with your comments for inclusion in the WAMES response.

You can read the draft guideline here

Read excerpts from the guideline here on our blog. Today we highlight the recommendations that would enable people with ME/CFS to overcome difficulties with accessing health and social care services.

1.8 Access to care (p17)

1.8.1 Service providers should ensure people with ME/CFS can access health and social care services by:

  • adapting the timing, length and frequency of all appointments to the person’s needs
  • taking into account physical accessibility, such as how far the person has to travel, whether there is suitable transport and parking and where rooms are for appointments
  • taking into account sensitivities to light, noise, touch, pain, temperature extremes or smells
  • providing care flexibly, such as by phone or video conferencing or making home visits.

1.8.2 Do not discharge someone who misses appointments because their symptoms have worsened. Contact them to explore why they could not attend and how to support them.

13 1.8.3 Be aware that people with ME/CFS are unlikely to be seen at their worst because:

  • debilitating symptoms, fear of relapse or post-exertional symptom exacerbation may often prevent people from leaving their home
  • cognitive difficulties may often mean people wait until they feel they can speak and explain clearly before contacting services.

People with severe or very severe ME/CFS

1.8.4 Service providers should be proactive and flexible in delivering services to people with severe or very severe ME/CFS, who may have particular difficulty accessing services and articulating their needs. This could include home visits, online consultations, written communication, and supporting their applications for aids and appliances.

Hospital care

For improving access to hospital outpatient care for people with ME/CFS, see recommendation 1.8.1.

1.8.5 Discuss with people who need inpatient care whether any aspects of where their care will be provided could cause problems for them, including:

  • where a bed is situated on a ward (if possible, aim to provide a single room)
  • the accessibility of toilets and washrooms
  • environmental factors such as lighting, noise, heating and smells.

People with severe or very severe ME/CFS
1.8.6 When planning hospital care for people with severe or very severe ME/CFS:

  • discuss with the person (and their family members or carers, as appropriate) what to expect when they come into hospital
  • aim to minimise discomfort and post-exertional symptom exacerbation during transfer to hospital, for example by planning the route in advance, avoiding noisy areas and admitting them straight to the ward on arrival
  • discuss the person’s management plan with them, including information on comorbidities, intolerances and sensitivities, to plan any reasonable adjustments that are needed
  • aim to provide a single room if possible
  • keep stimuli to a minimum, for example by:
    − seeing them one-to-one
    − using calm movements and gestures
    − not duplicating assessments
    − being cautious about the pressure of touch
    − keeping lights dimmed
    − reducing noise
    − keeping a stable temperature
    − minimising strong smells.

Maintaining independence

1.8.7 If a person with ME/CFS needs support at home, conduct a social care assessment, record and provide information and support on:

  • activities of daily living
  • mobility, including transferring from bed to chair, access to and use of the toilet and washing facilities, use of stairs, and access to outside space
  • dexterity and poor balance, including avoiding falls
  • their home, including environmental controls to avoid glare from lights, loud noise, and temperature fluctuations
  • the feasibility of equipment and adaptations
  • access to technology, including online access
  • where to get financial support and advice, for example signposting to advice on money management and making personalised arrangements with banks or the Post Office to access personal finances, and how to claim carers’ and disability benefits and grants.

1.8.8 Give families and carers information on how to access training and resources about how to care for the person with ME/CFS.

Aids and adaptations

1.8.9 Provide aids and adaptations identified in the person’s management plan without delay, so that people can carry out activities of daily living and maintain their quality of life as much as possible.

1.8.10 Enable prompt assessment for funding for home adaptation. If the person is not eligible for funding, continue to offer information and support in arranging home adaptations.

1.8.11 For people with moderate ME/CFS or severe or very severe ME/CFS, consider providing or recommending aids and adaptations (such as a wheelchair, blue badge or stairlift) that could help them maintain their independence and improve their quality of life, taking into account the risks and benefits. Include these in the person’s management plan.

Why the committee made the recommendations (p56)

The evidence showed that people with ME/CFS can have difficulty using healthcare services, particularly because of physical accessibility and the time constraints of appointments. This can make it more difficult to get the support and treatment they need.

The committee was also aware that common sensitivities in ME/CFS, such as to light and noise, can make it challenging to travel to and attend appointments and to receive inpatient care. The committee made recommendations to improve access to care based on these potential barriers.

The committee discussed the unpredictable and fluctuating nature of ME/CFS and the risk that people will be discharged from a service if they miss appointments when their symptoms worsen. They agreed to make a recommendation based on consensus to address the lack of awareness about this in health and social care services.

The committee was aware that difficulties accessing care are intensified in people with severe or very severe ME/CFS, particularly when they need hospital care. The evidence showed that, as a result of this, some people with severe or very severe ME/CFS have little contact with and support from health and social care services. To address this, the committee highlighted the flexibility and specific support needed by people with severe or very severe ME/CFS.

Maintaining independence

There was limited evidence directly addressing the barriers and facilitators to accessing social care. However, the committee agreed this was an important area of care and they could draw conclusions from the evidence on healthcare and use their own experience to make recommendations.

ME/CFS can affect a person’s ability to carry out activities of daily living and maintain their independence and quality of life. The committee agreed that everyone with ME/CFS should be asked how their symptoms affect their independence and then a social care assessment carried out if needed. Using their experience, the committee outlined the topics for assessment and discussion.

The committee also made further recommendations based on their own knowledge and experience, including that:

  • many families and carers do not know the most appropriate ways to support someone with ME/CFS and need advice on this
  • people with ME/CFS often have difficulty getting the equipment they need to support their activities of daily living and maintain their quality of life.

How the recommendations might affect practice

Some of these recommendations might need extra staff time or other healthcare resource use, for example to offer flexible appointments and home visits, make adjustments during inpatient stays and provide aids and adaptations. However, for equity reasons, people with ME/CFS need the same access to healthcare and support as other NHS patients that is commensurate with the severity of their illness.

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