A question has been submitted to the Department of Health and Social Care by Alexander Stafford, MP, Rother Valley.
Question:
To ask the Secretary of State for Health and Social Care, how many children have been diagnosed with myalgic encephalomyelitis or chronic fatigue syndrome in (a) Rother Valley constituency and (b) England in the latest period for which data is available.
Answer from DHSC:
The information requested is not collected centrally.
We find it incredible that despite SNOMED-CT diagnostic codes which could be used to identify the number of people with ME/CFS, the Department of Health and Social Care and the NHS are still – despite decades of asking – unable to tell us how many people have this medical condition. It is a matter of importance that I have raised with the Department during discussions about the ME/CFS Delivery Plan.
Russell Fleming ME Association
Another question was submitted by Alexander Stafford:
Question:
To ask the Secretary of State for Education, what assessment her Department has made of the impact of child protection procedures on families affected by myalgic encephalomyelitis or chronic fatigue syndrome
Answer from DHSC:
The statutory guidance ‘Working Together to Safeguard Children (2018)’ clarifies local authorities’ responsibilities for leading the statutory assessment of children in need and making child protection enquiries. The guidance sets out that local authorities, with their partners, should develop and publish local protocols for assessment. A local protocol should set out clear arrangements for how cases should be managed once a child is referred into local authority children’s social care and be consistent with the requirements of Working Together. The local protocol should reflect where assessments for some children will require particular care, for instance due to health conditions. The detail of each protocol should be led by the local authority in discussion and agreement with the safeguarding partners and relevant agencies where appropriate.
Every assessment undertaken should draw together relevant information gathered from the child and their family, as well as relevant practitioners to help decide the nature and level of the child’s needs and assess what interventions and support should be provided under Section 47 of the Children Act 1989. This should take account of any health conditions.
As it is for local authorities to manage this locally, the department does not hold a central record of this.
And a further question from Alexander Stafford
Question
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve (a) experiences and (b) outcomes for children living with myalgic encephalomyelitis or chronic fatigue syndrome.
Answer from DHSC
We are developing a cross-Government Delivery Plan on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). As part of the plan, we are working with other Government departments and stakeholders to determine ways to improve experiences and outcomes for all people who have ME/CFS, including children.