Exhausted and Isolated: Families of Disabled Individuals Share Their Struggle to Obtain NHS Care


Over 100 families caring for severely disabled adults and children outside of hospitals have reported to the BBC that they are not receiving sufficient support from the NHS. These families reached out following a BBC report about a mother who was often left alone to care for her son. The NHS maintains that support is based on individual needs and that guidelines ensure consistency across England and Wales. However, some families have described the system as adversarial.

Support from the NHS is provided through the Continuing Healthcare (CHC) scheme for adults, and its equivalent for under-18s, Children and Young People’s Continuing Care. Cases in England are decided by NHS Integrated Care Boards (ICBs), while in Wales, they are overseen by local health boards.

The BBC heard from 105 families who expressed serious concerns about how these two schemes are functioning, with most calling for reform. Some families reported that they were initially assessed as eligible for funding, only to have the decisions reversed. Others lost NHS support when they moved from one part of England to another.

Many of these families shared their stories, including tales of inadequate support, overnight care being reduced without explanation, and feeling pressured or intimidated into moving into care homes against their wishes.

The experiences of these families reflect wider issues within the health and social care system, such as rising costs and staff shortages. The BBC has found evidence of assessments containing multiple factual and procedural errors, and many families have claimed that medical records have been misrepresented or ignored.

NHS England maintains that the threshold for screening people for funding is low to ensure a full assessment is done, but most who apply won’t be eligible. It also states that eligibility is determined on an individual basis in line with guidance to ensure consistency across the country.

However, there is significant variation in eligibility rates depending on where individuals live. In some parts of England, over 50% of adults who apply receive support, while in other areas, it’s fewer than 10%. The variation is even more pronounced for under-18s, with eligibility rates ranging from 14% to 96% in 2022-23.

The Department of Health and Social Care acknowledges that there will always be variations in eligibility due to differing health needs and age profiles in different parts of the country. However, it maintains that a robust process exists for raising concerns or appeals.

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