The last article ended with a question about the documents. What were they? Why were they created? How were they helpful?
I’m going to refer to the main documents below. There were 9 of them. For each one, I’ll share what it was, why it was created and how it was helpful. After that, I’ll explore whether it saved time and explain the impact these documents had on the application for CHC funding.
What the health professionals have said
What is it? This was a brief log of the key points that were mentioned in each appointment whether they were in-person or on the phone, along with what was shared during unscheduled calls.
Why was it created? It was simply too much to carry in my head. I’m not a medically trained person. That coupled with me having Long COVID, meant that it wasn’t possible for me to carry everything in my head.
How was it helpful? It was useful during appointments when we saw different people within the same department but they weren’t up to speed with what had been said before. It was beneficial when someone from a different health department was looking at a symptom which overlapped with what another department was addressing. It was quick and easy to share information with those who needed it e.g. the carer, the agency that employed the carer, family, members of the council and so on.
You might be wondering how many professionals could be involved for this document to be needed. Here is a list of the ones that I can remember:
- Bowel and bladder (community-based)
- Cataract Team (hospital-based)
- Complex occupational therapist (sent by the Council)
- Dietician (hospital-based and community-based)
- District nurse (community-based)
- Eye Specialists (hospital-based)
- Gastroenterology (hospital-based)
- Neurology (hospital-based)
- Neuro-physio (hospital-based)
- Parkinson’s Nurse (hospital-based)
- Physiotherapy (community-based)
- Rapid Response Team (community-based)
- Respiratory optician (hospital-based)
- Speech Therapy (community-based)
- Social prescriber (community-based)
- Social worker (sent by the Council)
- The Falls Team (community-based)
- The Frailty Team (community-based)
- The GP
- Urology (hospital-based)
He was under the care of 4 different Trusts, the GP, various people who were involved when he was admitted to the hospital, the Council and more.
FAQs
What is it? I soon realised that Roger was being told a lot of information which he was struggling to remember. Also, it took time to process it and he had questions afterwards but the person who was with didn’t necessarily have the answers. Therefore, I created an FAQ document written for Roger as if he is asking questions, such as, why do I need to drink more water, why do I need to walk every day and so on.
Why was it created? It was essentially a tool for the carer to help Roger understand his condition and how that shapes what the professionals have said that he should/shouldn’t do.
How was it helpful? It was good for Roger but we later tweaked it and created another one for friends and family so that they could better understand what was going on. We also added information about what to expect to try and prepare them for it.
Understanding PSP
What is it? It was a PDF covering the main points about PSP so that Roger and his friends and family could quickly understand what it is, what the main symptoms are, what to expect and what may help him.
Why was it created? There’s information online but the information was vast and it was shared across several sites, so I went through a few different resources and created an easy-to-understand guide about PSP. We didn’t want him or his friends and family to feel overwhelmed or confused about the condition.
How was it helpful? It meant that they didn’t need to spend time doing any research, that they all had the same information and they were empowered with legitimate content which was enough detail for them to navigate this situation.
Current health conditions
What is it? A list of all his health conditions
Why was it created? Every time he visited A&E or had a scheduled appointment with someone new, they would ask us to state what conditions he has. To ensure that none were missed, I created a list.
How was it helpful? This became the basis for adding medical history and conditions which he had previously. All of this was helpful in medical appointments.
Timeline regarding changes in health
What is it? This was a spreadsheet detailing major changes in things like his speech, gait and so on.
Why was it created? To help the neurologist with the diagnosis.
How was it helpful? It was useful for the carer and medical professionals, other than the neurologist.
For the carer
What is it? This was a document detailing the key things that needed to be done or avoided or understood.
Why was it created? I realised that when his regular carer was away, the replacement didn’t seem to know these things.
How was it helpful? It was helpful for all the carers to have a go-to document with key information and it was useful to the agency that provided the carers as well.
Changes in health and medication
What is it? A document that was full of different tables to log information, such as, the activities he took part in, his blood pressure, any observations about his bowel or bladder, a food diary, issues with breathing, information about exercises and mobility, notes about falls or dizziness, changes in fatigue, taste, vision or memory, new symptoms, observations about his speech or pain, a log of his weight and a list of regular medication, as well as, that which was temporary.
Why was it created? We were asked about this during many medical appointments and it was also a good way to get a quick overview of any major changes.
How was it helpful? It was useful during appointments and easy to share with people, such as, the dietician.
Medication with annotations about how to take it
What is it? A table listing the medication that he was taking and if any of it could be taken in a different way.
Why was it created? He was having trouble swallowing some of the medication so we asked the Pharmacist to tell us which medication could be taken in a different way e.g. swallowed with yoghurt or dissolved in water.
How was it helpful? This was useful for Roger, the carers and the health professionals who were mentoring changes in swallowing.
Notes about confusion
What is it? A document listing examples of times when Roger seemed confused in some way.
Why was it created? We noticed a few times when he slipped back in time or seemed disorientated and confused. Again, it was a way to log it, to avoid carrying it in the mind and to ensure we didn’t forget the details and then share it with inaccuracies.
How was it helpful? It was useful for his family, the carer, the agency that employed the carer and some of the professionals who were supporting him.
Time-consuming or time-saving?
The time spent creating or updating these documents was nothing compared to the time that was saved when we needed to access and share the information contained within them.
The care agency has a system which the carers use to make detailed notes about their client’s health, activities that they’ve taken part in, which medication was given and when etc etc. However, they are day-by-day accounts. We’ve been in appointments in which the consultant or GP wanted to know if and how Roger’s blood pressure had changed recently. Would they have patiently sat there while we went through the records for each day to find the reading and then make a note of any differences? No However, the Google Doc had a table which specifically showed the blood pressure readings. These logs have saved time and energy. They also helped the professionals understand and treat Roger’s symptoms effectively. When this information wasn’t to hand or we couldn’t access it quickly, the professional’s lack of time became evident because they moved on and suggested we go with what we can remember or come back another time.
Essential for CHC funding
CHC funding refers to NHS Continuing Healthcare Funding.
It’s a way for the NHS to support individuals with severe, complex, or unpredictable health issues who require continuous care.
We received support from the Frailty Team and the Social Worker. They met with us, completed an assessment, filled out forms, made a decision, shared it with the panel, and then shared it with us.
The agency that provides the carers told me that the documents were invaluable in making a case for Roger’s need for support with the funding.
Public information leaflet: NHS continuing healthcare and NHS-funded nursing care
Sharing the load
There were some strong recommendations made by multiple professionals in different fields and others that were by only one or two people. The other intention for creating and sharing these documents was for multiple people to support Roger’s health needs. However, nobody else seemed to either remember these things or they didn’t want to remind Roger to follow them or they’d say it once and then drop it. Therefore, when my voice was the only one that consistently brought up the need to, for example, drink more water and explain why, I became the bad cop! Everything I said became tarnished with the same brush and most of it was ignored and even misconstrued to others.
It was a lonely place to be.
Part 10 of 11: ‘Outside of Roger’s health, what else needed doing?’ will be published on 27.2.25
Previous articles from this series
- Part 1: When Roger was diagnosed with PSP
- Part 2: Why we dropped everything and rushed to India
- Part 3: Find out what had to happen before they gave us permission to return home
- Part 4: Finding a care home
- Part 5: Settling into the care home
- Part 6: Finding a live-in carer
- Part 7: How did supporting Roger affect me?
- Part 8: Is it impossible to work and manage someone’s care?
