Labour's Parliamentary candidate for Northampton North has produced a comprehensive report into the support offered to dementia sufferers and their carers.
Sally Keeble's report, "Lost in the Process" sets out a package of reforms needed for NHS support for the 800,000 people living with dementia and other longterm conditions. The report draws from a survey of health services in England and the experiences of people in Northampton caring for relatives.
Sally Keeble said the seven recommendations would ease the heartache of people lost is a the maze of red tape that surrounds funding. "Fewer than one in ten of people living with dementia get access to NHS continuing healthcare funding which is designed to help meet the costs of caring. My report puts forward practical steps to help them.
"If you are living with dementia, or have a family member affected by the condition, I want to hear from you. You can let me have your views and comments here."
The report recommends that:
- Clinical commissioning groups, the new health authorities, should spend a proportion of their resources on specialised advocacy services to support people through the application, appeal and review process.
- A mandatory, accredited training scheme is needed for all health and social service staff involved in assessing people for continuing healthcare.
- GPs need to be more routinely and effectively involved in assessments of their patients for continuing healthcare.
- Detailed guidance is needed on how the views of family members should be taken into account in the process.
- Detailed guidance is also needed on involvement of external specialists.
- CCGs should have a proportion of their continuing healthcare decisions audited nationally.
- A national review is needed of how decisions on continuing healthcare are made to protect against a postcode lottery.
Welcoming the report, Alzheimer's Society chief executive Jeremy Hughes said: "people with dementia can often require round the clock care, putting huge strain on families and individuals both emotionally and financially. The financial support provided by NHS continuing healthcare is a lifeline for people with dementia and their carers.
"Callers to our Dementia Lifeline tell us that applying for continuing healthcare for a loved one with dementia is a minefield. All too often we hear of families who are refused funding because their local CCG does not adhere to proper process.
"It is entirely unacceptable that there is no duty on CCGs to fund advocacy services - which are essential to support families through the complex assessment process. A thorough review of NHS continuing care is needed to ensure vulnerable people are not unfairly disadvantaged by a flawed and poorly implemented system."
You can contact Alzheimer's Society through their website here.
To support Sally's work on dementia care services, Liz Kendal MP, shadow health minister, pictured, visited Northampton and took part in a roundtable discussion.
You can see detailed results of the survey of clinical commissioning groups here.