You report (11 September) on Kate Garraway “battling the system” to get her severely ill husband the care that he needs. Sadly, after decades of life-limiting illness, my husband died last year. I was his primary carer. I struggled to get an assessment for “continuing care” and, eventually, a nurse who had less knowledge than I did completed a tick-box exercise and decided that sending in contract carers to shower him in the morning and put him to bed at an unspecified hour was determined as a care package. It was highly unsuitable for his needs, which had become palliative.
When it became impossible for my husband to be cared for at home, I reapplied and was awarded continuing care funding, but the reality was that he would have to go to an establishment contracted by the local clinical commissioning group, effectively dismissing his individual needs and removing choice. He was not, therefore, eligible for funding, not even partial, for nursing homes of a good quality. I gave up trying.
There are hundreds of thousands of unpaid carers in the UK. Many, like me, are of pension age and have their own long-term health conditions. Carers’ organisations try hard to help, but the rules on funding for continuing care are shrouded in obfuscation and, in my experience, are set up to fail seriously ill patients and their families.
Lynne Collins
Leigh-on-Sea, Essex