Learning disability support in West Sussex CHC

All CHC is managed under the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care.

The CHC Team are committed to working with all individuals and their representatives in a personalised and holistic way. People who have a learning disability (LD) can access NHS Continuing Healthcare (CHC) in the same way as everyone else. In West Sussex the CHC Team have experienced specialist CHC LD Nurse Assessors to complete assessments, reviews and case management.

LD referral and eligibility

A referral to CHC should only be made following the completion of health and social care review by the professionals in direct contact with the patient. This process ensures their support and decision making is well understood, and indicates the need for referral to CHC on behalf of an individual with LD and/or their representative.

Most referrals will be made by a Social Worker (Checklist), or occasionally by a Nursing Home (CHC Referral Form), and sent by email to the CHC LD Team at cwsccg.chc@nhs.net. The referral is logged and passed to the specialist LD Team who will acknowledge receipt of the referral and all the relevant information, which is usually done within the week. The referral is then allocated to a named specialist CHC LD Nurse Assessor to work with the Operational Support Team (administration), in order to make all necessary arrangements to book assessments and where applicable request any additional information required to inform the assessment process.

Eligibility for CHC is based on provision of information often referred to as “evidence” which is collected from a variety of sources including GP, health and social care professionals, care plans, daily records etc. these are collated, requested and collected in advance to be in place at the time of the assessment. 

The CHC assessment will include the completion of the national CHC tool (called a decision support tool or DST) at the individual’s home (or nursing home / other residence). This takes approximately two hours and will generally be completed by a multi-disciplinary team (MDT), with the patient and/or family representative. The CHC Nurse Assessor will help to ensure all parties are given every opportunity to contribute to and engage with the assessment process, in order to ensure an accurate, clear and transparent decision is made. Following the assessment, the draft DST is sent to all parties for prior to final decision making.

Where an individual is found not eligible for NHS Continuing Healthcare and confirmation letter sent explaining the reason for the decision, the health and social care professional referrers would follow up as appropriate.

Eligible for CHC

Where a LD individual is found eligible for NHS Continuing Healthcare they are allocated a CHC LD specialist case manager / assessor. This case manager will make contact with you to discuss how the individual’s needs will be met or continue to be met, ranging either by the continuation of a current package of care, or to develop a new package of care also know as a Personal Health Budget (PHB). PHB considerations can include direct payments, notional budgets or a mixture of the two.


To ensure they meet an individual’s identified needs the West Sussex CHC Team routinely undertake CHC commissioning reviews at three months and then annually thereafter in line with the National Framework. To ensure an individual remains eligible for CHC other CHC reviews may be required throughout eligibility and patients or representatives would be made aware of these as appropriate.

Please note CHC care reviews may indicate the need to complete a CHC Eligibility Review using a CHC decision support tool (DST). In these cases an MDT will be asked to meet and consider if an individual remains eligible for NHS Continuing Healthcare.

Transition (from Children to Adult Services)

When a young person reaches the age of 17 years old, a referral to Adult NHS Continuing Healthcare can be made. Following this referral the usual CHC eligibility process is undertaken. As Children’s and Adult Continuing Healthcare are very different, parents, patients and representatives will experience significant change which the team will support individuals and/or representatives through. If the young person is found eligible for CHC from the age of 18, planning for transition to an adult package of care would begin. As outlined above if the young person is not found eligible, the West Sussex County Council would assess for consideration of eligibility for Adult Social Care support.

Mental Capacity Act (MCA)

Once a young person reaches the age of 18  years old the law states that capacity is assumed and no person can make decisions on behalf of another adult. In these cases where an individual does not have the capacity to make decisions for themselves, in the absence of a Lasting Power of Attorney (LPA), a Court Appointed Deputy (CAD) can be requested. Most decisions can be made in the ‘best interest’ of the patient in discussions with health and social care professionals as well as family and representatives.

The West Sussex CHC Learning Disability (LD) Team are available Monday to Friday 9am – 4.30pm. You can contact them at cwsccg.chcldteam@nhs.net and can usually expect a response within two working days. You can also contact the team by telephone on 01903 708 609 (option one) by leaving a message requesting a call back.

Learning disabilities (LD) useful tools