Navigating the maze of statutory entitlements for mesothelioma patients and their families
When mesothelioma patients receive their diagnosis, it is often a shock and it can be difficult to know where to turn. One avenue that can be explored is to seek assistance from statutory services to help with meeting a Mesothelioma patient’s needs, or the needs of a loved one. However, this can be a challenging and time-consuming process.
Many do not know which statutory service to contact to instigate an assessment process. Some may find it difficult, particularly at a time of crisis, to fully prepare for and engage with an assessment to position themselves with the best possible chance of securing the right support to meet their assessed needs.
Couple this with the increasing tension between the high demand for services and the significant funding pressures public bodies face, it is so no wonder that many feel overwhelmed and lost.
To assist Mesothelioma patients, family members and friends, with understanding what support may be available to meet their needs, or the needs of a loved one, we have summarised below the different statutory funding streams it may be worth exploring.
Help for Adults
For Mesothelioma patients, family members or friends aged 18 or more, it may be possible to obtain health and social care support. It is worth noting that a key difference between health and social care provision is that care funded by the NHS is non-means tested (i.e. free at the point of access). By contrast, adult social care support is means tested and therefore subject to a financial assessment process.
Health care funding streams for adults include:
- NHS Fast Track funding – for patients or adults with a rapidly deteriorating condition, which may be entering a terminal phase. The idea of this funding stream is to ensure that appropriate care and support is put in place within 48 hours. The usual NHS Continuing Healthcare assessment process is bypassed with the completion of a Fast Track Pathway Tool.
- NHS Continuing Healthcare – a package of ongoing health, social care, and potentially accommodation that is arranged and funded solely by the NHS where the patient or adult has been assessed and found to have a ‘primary health need’. The process involves the completion of a Decision Support Tool at a Multi-disciplinary team meeting.
- Jointly-funded packages – for patients with health and social care needs. The health-funded proportion is non-means tested; however, the social care contribution will be subject to the means-testing rules.
- NHS Funded Nursing Care Contribution – a set, weekly rate of £219.71 (from 1 April 2023) if the patient or adult is assessed as requiring nursing care in a registered nursing home.
- Section 117 Mental Health Act (MHA) 1983 aftercare – if a patient or adult has been detained under Section 3 of the MHA 1983, they are automatically entitled to free aftercare support upon discharge. This may include accommodation.
Eligibility for means-tested adult social care support provided under the Care Act 2014regime is dependent on demonstrating that the Mesothelioma patient, or adult has:
- A need for support because of a physical, mental impairment or illness; and
- Is unable to achieve two or more care outcomes (e.g. maintaining a habitable home, managing nutrition); and
- As a result, this is having a significant impact on the adult’s well-being; and
- Is ordinarily resident in the Local Authority’s area.
Help for Children and Young People
Some Mesothelioma patients may have grandchildren, or friends, caring for a child or young person living with a disability, injury or illness. At a time of crisis, ensuring they receive the support required to meet their complex needs is likely to be crucial to ensuring that families have a framework in place to support their loved one with Mesothelioma.
Different funding streams may be available to meet the special educational, health and social care needs of a child or young person. Support may include:
- Children’s social care – the Children Act 1989 & Chronically Sick and Disabled Persons Act 1970 provides that if a child is disabled, he or she is automatically a ‘child in need’ to which the Local Authority has a duty to safeguard and promote their welfare. Non-means tested support (subject to a power to charge) may be available to those where an assessment has determined the provision of support services are ‘appropriate’ and/or ‘necessary’.
- Continuing Care for Children and Young Persons – different to NHS Continuing Healthcare for adults. A Continuing Care package is non-means tested and will be required when a child or young person has needs arising from a disability, accident or illness, that cannot be met by universal or specialist services alone.
- Education, Health and Care Plans (EHCP) – provided under the Children & Families Act 2014, an EHCP is a legally binding document which details all the education, health and social care needs of a child or young person, the outcomes sought and the special educational provision (i.e. specialised support) required to meet their assessed needs. For example, speech and language therapy, or placement in a specialist residential school.
