In the fifth blog, I look at the role health and social care services played in the last nine months of my Mum’s life. I have already discussed the role of decision making and what to expect. So I will try not to repeat that here.
The support we received from the NHS was pretty good, a couple of times my Mum was discharged from hospital without medication, this caused a great deal of work for our GP. I would say the NHS did what it could, I would not say that my Mum’s care was world class, staff tried their best but they seemed distracted and unsupported most of the time. The NHS is clearly under pressure, but I did not get the feeling that more money would solve its problems. It was mainly poor process and lack of communication that caused most of the issues. Sadly I don’t think the Royal Surrey County Hospital in Guildford is a good hospital.
Such a short time
The NHS and Social Services are under so much pressure don’t expect to have much engagement unless it’s in their interests to do so. I seemed to me that everything they do is part of some fine financial judgement. At best I could expect health professionals to visit Mum less than 1 hour per week in any programmatic way. Yes, the GP came to the house, if requested, but community nurses will only come out if the NHS saw it as a way of stopping the use of a more expensive form of provision. In my Mum’s case, she realised that calling 999 was the only way of guaranteeing health service support. As a result, the local community team put a regular visit in place to help my Mother stay at home and not call 999. Surrey Social Services never visited my Mother.
This Community support was vital because it enabled me to have regular contact with my Mother’s care team and of course it gave my Mum the confidence she needed.
Filling out the endless Forms
You will find that you will need to fill out numerous forms, Blue Badge forms, support and attendance payments, access to services and complaints and feedback. All of them are long, complex and ambiguous. I would say that most of them are designed to make it impossible to complete them without specialist help. The worst of them is the National Reporting and Learning System (NRLS). Multiple pages of detail that you need to complete if you think you have witnessed unsafe care in an NHS establishment. (Note the name is pretty obscure, it’s probably meant to be.)
My top tip with Forms is to get the health and social care professionals to fill them out for you. And the only way to do that is the next top tip. If the Hospital wants you to do something, ask them to do something for you. So when it became apparent that my mum needed support at home, I asked social services and the discharge team in the hospital to complete the Attendance Allowance form for my Mum. Guess what, they did, and it was approved, and I took Mum home. The whole thing took less than 2 hours. We had spent some months trying to apply ourselves for the allowance with no success.
No sharing of information
I have mentioned in a previous blog the lack of sharing of information. Health and Social Care don’t share any significant information. So you will have to act as the coordination hub. Your phone camera is a great way of recording forms and general information.
The NHS doesn’t do email with patients and family
I found if hard to communicate with healthcare professionals, they don’t want to use Email as a channel. The best I could do was SMS, and even then some would not accept attachments such as photos of meds and reports. It seemed like a policy decision because everyone appears to have the same response.
It struck me that the Community team just needed a Customer/Patient Relationship Management system to stay efficiently connected to their workload.
My Top Tips
- Get help from healthcare professionals to fill out forms
- Collect the mobile phone numbers of people who are involved in care; you can then SMS them.
- Make it clear when it’s in the interests of the NHS to do or try something different. You may be able to change their support response and improve outcomes for everyone.