What I’ve been doing to support Roger and his family
I’m not sure if I’ve managed to capture everything but the following list captures most of what I’ve been managing.
- to be the main contact for all health professionals
- to be the main contact for other professionals such as occupational health and social workers who were sent by the Local Authority
- to attend all appointments that involved any type of consultation
- to attend all appointments in which his medical history and information about his current state of health needed to be shared
- helping to get funding for his care by liaising with the nurse from the frailty team, the social worker and another nurse
- checking emails – we’ve set up a separate email address for all notifications about health
- downloading letters about future appointments and reports from previous appointments so that they could be uploaded to the calendar (see below)
- ensuring that his health appointments were up to date – we created a separate calendar (that the immediate family could view) which showed scheduled and unscheduled appointments and phone calls to do with Roger’s health
- after any letters, reports or reminders were downloaded, we attached them to the corresponding calendar entry in the ‘health calendar’
- reading the letters and following up when necessary
- sending reminders about appointments to the carer
- arranging for the purchase of tools to maintain some level of independence, such as adaptable cutlery, a mat to stop the crockery from sliding around on the food tray and anti-slip mats for the shower
- sending updates to family members and friends
- reading and sharing information that was received by SMS
- politely challenging health professionals who didn’t have a full understanding of Roger’s situation, for example, when they prescribe medication that isn’t suitable because it clashes with other medications or when medication that was meant to be taken temporarily isn’t removed from his prescriptions etc.
- pushing for specific appointments to be sooner and explaining why it was necessary
- liaising with the agency that provides the carers
- liaising with the carers about a whole range of things
- setting up a support group on WhatsApp so we can get help for things like collecting Roger from A&E or helping him with mobility
- rearranging the furniture so it’s more conducive to his vision
- creating a document that details all the things that the health professionals have said
- creating a document to log information, such as, what he eats, changes in speech or mobility or taste and so on
- arranging for him to have a better laptop so that he can use specific speech therapy tools
How did it affect me?
Doing the above required me to do the following:
- I needed to be able to carry information about Roger’s health in my head
- I needed to be able to (on demand) articulate it to those who needed to know
- I had to be available to answer unscheduled calls
- I rearranged plans to be available for appointments that had no pattern to them i.e. they could be on any weekday and at any time of the working day
- I needed physical and cognitive energy
- To take the load off my memory and be able to easily share information with others, I created documents to record key points
How did my experience reinforce the need for this level of project management and proactiveness?
I could understand why this kind of project management was needed initially but I didn’t count on it not easing off. I also didn’t realise that the lack of coordination within the NHS would mean that I would have to be this proactive, reactive and alert, almost like a detective. Here are some examples:
- When he was in the care home, the GP asked the staff to measure his blood pressure when he was standing up because he was experiencing dizziness and seeing spots. However, when they reported that his blood pressure was stable, I queried how they were measuring it and that’s when we discovered that they were doing it when he was lying down and sitting!
- He was taking medication for a urinary issue but he had a catheter! The Urologist had a list of his medication in front of him and he knew he had a catheter yet he didn’t realise that he shouldn’t be taking this medication. I asked him to explain the purpose of the medication and then asked if he should be taking it if he has a catheter and he said no. He explained that unfortunately, in the NHS, once you’re put on medication, nobody really assesses it and you end up taking it forever.
- The consultant from the Falls Team put him on medication for the issue with his blood pressure because it put him at risk of falling. Why didn’t he know that he doesn’t move without the help of a carer and isn’t at risk of falling? The Neurologist asked if he had symptoms and then suggested that he come off it if he didn’t. During the next appointment with the consultant from the Falls Team, he decided that his blood pressure readings weren’t changing so he wanted to increase the dose. I had to make a strong case that Roger isn’t mobile at all unless someone helps him and therefore isn’t at risk of falling so he doesn’t need the medication.
- Another mishap happened when Roger moved from the care home to his own home. He had been put on 2 new medications. This was on a trial basis, during which he needed to stop taking one of his existing medications. However, the letter was sent to the GP that he was registered with temporarily while he was at the care home. It didn’t get forwarded to his regular GP because it took 3 weeks or more for him to be registered with that surgery again. During this period, he was taking the new medication, as well as, the one that he was meant to come off. The GP asked why he was on all this medication because it was contradictory but he didn’t do anything about it as it had been prescribed by a consultant so I contacted them, told them what had happened and asked if he should be taking all the medication. That’s when we found out that the instructions were relayed in a letter which was never received.
Specialists look at their own area of expertise but don’t necessarily think about or know how what they recommend will affect what others have said.
The system isn’t working and staff are barely staying afloat so they haven’t got the time and some may not have the inclination to think beyond a specific point.
8 of 11: ‘Is it impossible to work and manage someone’s care?‘
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
