NHS’s focus has clearly shifted to managing budgets instead of assessing needs with CHC - Yorkshire Post Letters

Your major PostScript article on August 29 was very much welcomed. I thank James Urquhart-Burton for his tireless work in supporting families through the gruelling and demeaning process of applying for Continuing Health Care but it really shouldn't be necessary for families to have to resort to legal processes to get the care for their loved ones which is a right.

Why is there even an application process for which older people with complex conditions and the majority with dementia are disproportionately affected? If you have a cancer diagnosis just about everything is thrown at you from nurses, equipment, support services whether from NHS or charity.

I have many years experience of this diabolical system having first been employed to carry out assessments when the policy was first introduced and over the following years I was responsible for implementing the National Framework across a region where training was provided to ensure consistency of application and quality assurance to ensure fairness. I worked with the Ombudsman's office to review cases and carried out retrospective reviews which resulted in the NHS repaying families significant amounts of money,

Over the years, and with many re-organisations of the NHS, the focus has clearly shifted to managing budgets instead of assessing the individual's needs and very often by staff finding themselves in the role they did not choose and under pressure from the organisation. Without proper training this will never work.

I am currently supporting a friend who cares for her mother with complex conditions including advanced dementia and is clearly nearing end of life.

Despite many health and care professionals involved with the care of this patient where the carer is trying to support her to remain safe at home and to avoid another hospital admission, no one even mentioned CHC until I did. The average member of the public has no knowledge of such until informed as needed. These included Social Worker, District Nurse, GP and Admiral Nurse.

Due to the multiple conditions which the patient is suffering from I advised the carer to ask for CHC and provided her with the relevant information including forms for Fast Track as she was clearly towards end of life. The tortuous process that followed was enough to put any family off from pursuing the application. The right hand didn't know what the left was doing giving the carer misinformation, delaying even a Fast Track application which should be completed within 48 hours.

With many staff working remotely the only communication seemed to be by email so no team work or learning from each other. They did not follow their own guidance from the ICB and we had to advise them what to do.

As with social care, families do not know the intricacies of such complex systems until it is needed so staff must be alert to advising them of options, including CHC at every opportunity. CHC should be part of mandatory training for NHS and social care staff.

There is currently a campaign pressing the government to improve the CHC process which involves many charities including my own, TIDE - together in dementia everyday. www.tide.uk.net