Fighting the system: the reality of accessing health and social care

When time is so precious, it should be spent with family, not fighting a system that is supposed to help us.

I have been thinking a lot recently about the many systems our society has in place which, in a perfect world, would be there to help.

In reference to her experience of trying to access the healthcare system for her husband, Kate Garraway recently said she had to “fight the system that should be there to catch you when you fall but feels, when you’re going through it, like it’s there to catch you out”. This really resonated with me.

Last year I had reason to access the health and social care system for a family member, which was the most stressful time of my life. Not only did I have one parent dying, I had another parent who was becoming frailer by the day whilst also trying to provide care. Like many others who haven’t needed to access this system before, I thought that I would liaise with the family GP and health services for the appropriate support available to my parents. 

But wow. How wrong I was.  

We needed help

I first contacted social services in November 2022, whilst our family GP made contact to request an assessment for support. Someone then met with us promptly and carried out an assessment, with my father added to the waiting list for day care.

My father’s health declined every day, which also had an impact on my mother’s health. By January it was clear that twenty-four hour nursing care was needed, and so my family were starting to visit residential care homes. This was when we were informed that anyone being admitted to a care home must be assessed by a social worker first to ensure that it was in the best interest of the individual. By this time, I was contacting social work almost every day, and it became clear that the more incidents I reported, the higher priority he would be given. Eventually my father was deemed as high risk, high priority in January 2023, before being put on a waiting list to be assessed for residential care. 

He was then assessed in March, with the procedure taking a lot of time. This had to include information from his GP, specialist, social work, and office of the public guardian, before being reviewed by a senior management team to ensure that this was appropriate for my father. 

It was then agreed that my father required twenty-four hour nursing care, which would be self-funded (£1300 per week). Luckily, our family had found a lovely, caring facility for him to go, but as my father was a very tall man, they needed an extra-long bed, which had to be ordered. 

Hope

We were given instructions of what my dad needed to take with him. We prepared his things ourselves, and then we got a call to say the bed had arrived, but without a mattress. We were then given another date, which came and went. By this time, we were broken, exhausted, and becoming increasingly distraught with the emerging situation. 

My father’s health was still declining, and as a last resort, we called our GP and asked him to visit. He was shocked when he saw the extent of his decline and arranged an ambulance to take my father to the local hospital. He stayed here for less than twenty hours before being moved to the care home, who were now able to take my dad as a patient. 

We accessed the help we needed

My dad lived for another 6 days until he passed away in April 2023, being kindly and compassionately cared for in the system that we had to fight every step of the way to get into. My mother said to me if she had to deal with this on her own, it wouldn’t have come to fruition. She would’ve phoned for help once and wouldn’t have called again. 

My parents had us negotiate this system for them, but how many people are trying to do this on their own? When you are under so much pressure or you’re unwell, how would it be possible to do this?

The system is in place to protect the vulnerable. However, in this case, through no fault of the staff in the system, the constraints and strains within in it can cause more harm than good.

Echoing Kate Garraway’s experience, when time is so limited and precious, it should be spent with family, not fighting a system that is supposed to be in place to help us. 

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