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8 July 2020 | Comment | Article by Lisa Morgan

The death of a changemaker: a tribute to dementia campaigner Barbara Pointon MBE

Sadly the dementia campaigner Mrs Barbara Pointon MBE has recently passed away. Mrs Pointon herself had suffered from dementia for the past 2 years.

Mrs Pointon avidly campaigned to raise awareness about the realities of living with dementia and the struggles experienced by their carers.

Mrs Pointon first came to the public’s attention in 1999, when she and her husband Malcolm appeared on an ITV documentary- ‘Malcolm and Barbara- A Love Story’. The aim of the programme was to bring dementia out of the shadows and highlight the difficulties of caring for someone with dementia.

Mrs Pointon’s husband started to show the first signs of dementia when he was just 49 years old. He lived with the illness for 17 years until he died in 2007.

In 2004 Mrs Pointon made a complaint to the Health Service Ombudsman regarding her local health authority’s refusal to fund her husband’s care through NHS Continuing Healthcare. NHS Continuing Healthcare is when the NHS meets the full cost of an individual’s care needs because their primary need is for health.

Mrs Pointon argued that the health authority’s eligibility criteria had been applied in such a way that excluded the provision of NHS Continuing Healthcare funding at home; focused on physical health needs at the expense of mental health needs and failed to recognise the care that Mrs Pointon provided to her husband.

The Ombudsman agreed with Mrs Pointon and asked all health authorities to review their eligibility criteria ‘to ensure that the criteria for funding care at home and the recognition of patient’s psychological as well as physical needs are clearly defined.’ The case set a platform and had a fundamental impact on NHS funding for individuals who are cared for at home.

Current guidance for eligibility for NHS Continuing Healthcare funding states that the setting of an individual’s care should have no bearing upon their eligibility, which I believe is testament to Mrs Pointon’s fight. However, despite this we still see decisions made by health authorities where the setting of care is incorrectly considered.

Following the Ombudsman’s decision Mrs Pointon continued to campaign and served on select committees, as an ambassador for the Alzheimer’s Society and Dementia UK. She was also awarded an MBE in 2006 for services to carers of those living with dementia.

Disclaimer: The information on the Hugh James website is for general information only and reflects the position at the date of publication. It does not constitute legal advice and should not be treated as such. If you would like to ensure the commentary reflects current legislation, case law or best practice, please contact the blog author.


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