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The below Parliamentary question was asked by Lord Bassam of Brighton on 2014-05-06.

To ask Her Majesty’s Government how many neurofibromatosis sufferers they estimate to be in the United Kingdom, broken down by (1) county, and (2) type.

Earl Howe

NHS England commissions neurofibromatosis type two (NF2) services and complex neurofibromatosis type 1 (NF1) services as part of its remit to deliver specialised services.

NHS England has published service specifications for both types of neurofibromatosis. These estimate that in England there are 11,267 individuals with NF1 and 862 with NF2.

The Department does not have specific guidance relating to the special travel needs of neurofibromatosis sufferers. Domestic equality legislation makes it unlawful for transport operators to discriminate against a disabled person simply because they are disabled, treat disabled people less favourably or fail to make reasonable adjustments in the way they provide their services, depending on the type of vehicles and the services they offer to the public.

Furthermore, an extra level of protection is provided by recently implemented European regulations on passenger rights across all transport modes. These provide a set of rules for the treatment of disabled people and people with reduced mobility.

The below Parliamentary question was asked by Lord Bassam of Brighton on 2014-05-06.

To ask Her Majesty’s Government what diagnostic training general practitioners receive with regard to neurofibromatosis.

Earl Howe

The content and standard of medical training of trainee general practitioners (GPs) is the responsibility of the General Medical Council, which is an independent statutory body. It has the general function of promoting high standards of education and co-ordinating all stages of education to ensure that medical students and newly qualified doctors are equipped with the knowledge, skills and attitudes essential for professional practice.

In the specific area of genetics in primary care, the curriculum designed by the Royal College of General Practitioners (RCGP) requires GPs to understand that while some genetic conditions always present with the same signs and symptoms, others can show variability between family members, particularly some autosomal dominant conditions (such as neurofibromatosis type 1).

The Government has mandated Health Education England (HEE) to provide national leadership on education, training and workforce development in the National Health Service. This mandate includes a commitment that HEE will ensure that GP training produces GPs with the required competencies to practise in the new NHS. Consequently HEE will work with stakeholders to influence training curricula as appropriate.

The below Parliamentary question was asked by Lord Bassam of Brighton on 2014-05-06.

To ask Her Majesty’s Government what financial support is provided to carers of neurofibromatosis sufferers.

Earl Howe

We are very much aware of and greatly value the significant contribution which unpaid carers make to the care of disabled people.

If a disabled person has neurofibromatosis and qualifies for a ‘gateway’ benefit, then their carer could be entitled to Carer’s Allowance, which is currently £61.35 per week. This will depend on certain conditions of both the disabled person and the carer being satisfied. Universal Credit includes a carer element where an eligible adult in the household provides regular and substantial care for a person with a long-term health condition or disability. The element is awarded where that person satisfies the conditions of entitlement of Carer’s Allowance.

Support for carers is an integral part of social care. Under current legislation, local authorities have a duty to assess carers who are providing substantial care on a regular basis, when requested to do so. The assessment and any eligible services to follow that are designed to support a carer to continue their caring responsibilities, are for the local authority to determine.

Carers are also central to the Government’s proposals for improving care and support, and there are significant improvements in the Care Bill for carers. The Bill extends carers’ rights to an assessment, which will be based on an appearance of need and will include consideration of the impact of caring on the carer, and the outcomes they wish to achieve. For the first time, there will be a duty on local authorities to meet carers’ eligible needs for support, putting them on an equal footing to the people they care for.

We have also provided £400 million to the National Health Service over four years from 2011 for carers to have breaks from their caring responsibilities. In the 2013 Spending Review, we announced the £3.8 billion Better Care Fund, which includes £130 millionfunding for carers’ breaks for 2015-16.

The below Parliamentary question was asked by Lord Bassam of Brighton on 2014-05-06.

To ask Her Majesty’s Government whether they intend to review special educational needs assessments to ensure that the needs of neurofibromatosis sufferers are taken fully into account by education services; and if so, when.

Lord Nash

Schools are already required to support children with long term medical conditions, and this would include suffers of neurofibromatosis. Non-statutory guidance is available to schools, “Managing Medicines in Schools and Early Years Settings”, to help them manage medicines and supporting children with medical needs such as this.

From September 2014, there will be a new duty, (introduced in the Children and Families Act 2014), on governing bodies of maintained schools (and proprietors of academies) to make arrangements to support pupils at school with medical conditions and to have regard to statutory guidance. The proposed text of the guidance (upon which we have consulted publicly) is available on GOV.UK so that schools can prepare for implementation in the autumn term. It sets out the requirements on schools to support children with medical conditions, which we would expect them to apply to conditions like neurofibromatosis.

The below Parliamentary question was asked by Lord Bassam of Brighton on 2014-05-06.

To ask Her Majesty’s Government what guidance they provide to schools, colleges and universities about taking into account the additional difficulties that neurofibromatosis sufferers encounter with examinations.

Lord Nash

Guidance given to schools and colleges is a matter for the Office of Qualifications and Examinations Regulation and I have asked its Chief Regulator Glenys Stacey to write directly to Lord Bassam of Brighton. A copy of her reply will be placed in the Lords Library.

Equality Challenge Unit provides advice for higher education institutions on a range of matters, including reasonable adjustments for students with disabilities. More information is available at www.ecu.ac.uk.

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The below Parliamentary question was asked by Lord Bassam of Brighton on 2014-05-06.

To ask Her Majesty’s Government what plans they have to provide guidance to long-haul transport providers to ensure that the special travel needs of neurofibromatosis sufferers are taken into account.

Earl Howe

NHS England commissions neurofibromatosis type two (NF2) services and complex neurofibromatosis type 1 (NF1) services as part of its remit to deliver specialised services.

NHS England has published service specifications for both types of neurofibromatosis. These estimate that in England there are 11,267 individuals with NF1 and 862 with NF2.

The Department does not have specific guidance relating to the special travel needs of neurofibromatosis sufferers. Domestic equality legislation makes it unlawful for transport operators to discriminate against a disabled person simply because they are disabled, treat disabled people less favourably or fail to make reasonable adjustments in the way they provide their services, depending on the type of vehicles and the services they offer to the public.

Furthermore, an extra level of protection is provided by recently implemented European regulations on passenger rights across all transport modes. These provide a set of rules for the treatment of disabled people and people with reduced mobility.