Mr Johnson is a gentleman in his early sixties with an Acquired Brain Injury. He has been in receipt of NHS Continuing Healthcare funding for 7 years which pays for an extensive care package in his own home, where he lives with his wife who is also his main carer. The cost of the care package is £80,000 per year. At his annual continuing healthcare review Mr Johnson was assessed as no longer eligible despite presenting with healthcare needs that necessitated 24 hour care and constant monitoring during the day, due to the complex interrelation of his cognitive impairment and challenging/dangerous behaviour. Mr Johnson’s family felt that his needs had remained largely unchanged since the first assessment 7 years previous due to the nature of his injury.

The thought of continuing healthcare being removed and the potential risk of a different care agency being introduced by the Local Authority should the family not be able to meet the full cost of his care, was extremely stressful for Mr Johnson’s wife, who was already exhausted and struggling to understand the continuing healthcare criteria.

Beacon assigned a caseworker who accessed Mr Johnson’s assessment and spent several hours with his family and her support worker helping them to understand how Mr Johnson’s needs had been assessed against the criteria, so that they were suitably empowered to challenge any aspect of the assessment which they felt to be inaccurate. The caseworker also identified a number of areas in which the NHS trust responsible for assessing Mr Johnson’s needs had not followed procedures established in the national assessment framework.

Beacon set up and attended a resolution meeting at the CCG (now ICB) alongside Mrs Johnson, in which it became apparent that there was insufficient evidence to substantiate the high level of needs eluded to in the assessment, and so the decision-making panel felt that they could not have upheld a decision of eligibility. The caseworker challenged the CCG as to why they had not passed the assessment back for further work, as is the correct procedure in such circumstances. Beacon’s caseworker proposed that Mrs Johnson be given sufficient time to collate the relevant evidence to substantiate her husband’s care needs and then convene a second (appeal) panel for the new evidence to be considered.

The caseworker then worked with Mrs Johnson and her husband’s clinical team over a two month period, firstly to identify Mr Johnson’s extensive needs and then to design and produce highly detailed daily records, risk assessments and care plans relating to specific areas of his care needs that had not been captured within the more generalised care plans. This evidence, together with a statement from the care team (drafted by Beacon) confirming that the intensity of meeting Mr Johnson’s complex physical needs was retrospectively applicable to the date of the original assessment, was passed on to the CCG and reviewed by an appeal panel alongside the original assessment evidence. Mrs Johnson was not invited to attend despite the caseworker requesting that they be invited. Again, the panel’s decision was that Mr Johnson did not have a primary health need and was therefore ineligible.

Beacon’s caseworker was convinced that the panel could have not have properly understood the complexities of Mr Johnson’s needs because although they were multi-disciplinary, they were not brain injury specialists. The caseworker sourced further evidence to support Mr Johnson’s cognitive needs, having consulted with his Neurological Specialist. He used this evidence to construct an appeal statement that described in detail the difference between Mr Johnson’s cognitive impairment and impairment that is typically found in a dementia patient, specifically describing the way in which Mr Johnson’s perception of reality impacted upon his behaviour, and the knock on effect this challenging behaviour had on meeting his physical care needs. This was used to link the intensity of meeting his combined needs to the primary health need criteria.

The caseworker then requested a third health panel, where he advocated on behalf of the family, describing how Mr Johnson’s care needs met various elements of the criteria alongside the additional evidence which had been obtained from Mr Johnson’s Neurology consultant. This time, the panel concluded that Mr Johnson did have a primary health need and so he was found eligible for continuing healthcare, with funding backdated to the start of the assessment process. An exceptionally relieved Mrs Johnson received reimbursed care costs amounting to £100,000 and is now able to concentrate on looking after her husband rather than worrying about care fees.

Date of original upload: 4 September 2015