Testing emergency services - they work well

Haven‘t been feeling well for a week or so, total loss of appetite, pains all over, and sharp pains in my head.

On the Thursday started feeling better and was able to eat again.

I was doing the LFT Covid tests and they were all negative.

Saturday morning I was sat in the kitchen having some breakfast when I suddenly felt a bit giddy. Next thing I knew I was lying on the floor and someone was talking to me on my watch.

It took a little while to realise what had happened. The ‚Fall Alert‘ on my watch had automatically dialled 999, and also sent text messages to my emergency contacts. The 999 responder was trying to find out what had happened - had already called an ambulance, but said that if I had a way to get myself to the hospital I shouldn‘t wait.

My son and daughter arrived within a few minutes - they both live fairly close, and my daughter drove me to A&E. She was mainly concerned about a lump on my head where I had hit the floor, otherwise I seemed to be OK. At A&E I was triaged within a few minutes and they started on blood tests, ECG‘s and a lot of other tests quite quickly. Even had a CTScan of the head.

All in all I was in hospital for about 5 hours. Nothing found that would explain anything. I surmise that my blood sugar was very low which caused the collapse. 

My consultant thinks that was also probably the case.

My appetite isn‘t good but is getting better with the help of some high protein drinks and soups.

Getting some pain relief

 At last I‘m getting some pain relief for my back. Taking Codeine - just 15mg a day at the moment, and it does seem to be relieving things. 

Had a great meeting yesterday with Daisy Campen and Gina Awad about getting some University student support for the work she is doing - with the Cosy Routes and anything else.

On Saturday went over to Laura Wall in Teignmouth where I was able to buy one of her prints and several bottles of Christmas gin - for presents I might add. Had lunch at The View. 

I‘ve had a lot more energy in the last days. Getting little things done.

Just had an invite for another Arena Session with Chris Scotton, Sarah Lines and Prof. Gibbons. I hope it brings some benefit - won‘t be until February or March. I think I‘ll have to practice what I‘m going to say.

Going to the burial of Meg Leng on Friday. It‘s at a natural burial ground near Totnes. Not a church or religious ceremony. Will be an interesting experience I think. I wonder whether I‘ll be ok there. Sounds like it might be a lot of standing.

Have a session with physio-therapy next week.

Extending the concept of the MDT into the day to day management of complex medical care.

Currently there seems to be a division between the role of the GP and the role of the specialist consultant.

Where a patient has an ILD condition, eg IPF, this may lead to a heart condition or, depending on the medications involved, possibly a liver or kidney condition. Each of these will be managed by different consultants, and so far as I can see, there is not always a huge amount of communication between the disciplines. It is also, more significantly, not clear which of these consultants should be the ‘lead’ contact point for the patient when faced with a change in symptoms, or a deterioration in condition.

Logically you would think it should be the GP who is managing the interactions and who should be the primary contact point for the patient.

This is turn raises the question of whether, for complex cases, there should be a single doctor or senior nurse, who effectively is a ‘named’ contact for the patient.

Another gap

 A lot has happened - but also not a lot has happened.

Terry Lowther passed away last week. He had Sarcoidosis but not sure of what actually caused his death. He was still a councillor right to the end.

I‘m still struggling on with the illness. I get frustrated, seem very impotent. Want to do a lot more than I‘m actually capable of. I think I‘m not capable but I feel guilty for not trying harder. Spend all my time on my computers procrastinating rather than actually doing stuff.

Sometimes very depressed, but most times very content with my life. 

Recently I keep getting the feeling that I‘m just going to pass away in my sleep. Just not feeling very well sometimes, and get very giddy sometimes.

Hoping to get caught up with outstanding jobs soon. Have been into the office a couple of times, and will be going in again tomorrow late morning, till early evening.

Feeling a lot better

 Been feeling a bit down just lately. The pains in my back have been quite bad, making it difficult to even stand up straight let alone walk anywhere.

A couple of days ago though thought I would try something which someone recommended a long time ago but which I’d never tried - turpentine oil. It was recommended as a cure all for everything including the IPF so I wrote it off originally as just a quack remedy.

I looked it up again and one of the things it is said to do is relieve pain. I ordered it, and yesterday it arrived. Rubbed some on the small of my back, where the pain is seated. I have arthritis in my lower spine.

Just 24 hours later I feel a lot better and although I’m very stiff still, the extreme pain when I walk has eased. 

I have a feeling that if I can ease the pain to be able to move more freely again, the additional movement will itself lessen the pain, and stop it getting worse.

Have to decide now whether I should be getting out to attend meetings again. By the end of June I have two gatherings I should attend - one an ‘away day’ with the staff of the nursing academy, and an informal day in Cambridge with APF.

The weather is a lot better now, but not blazing sunshine. Makes life seem a lot better though.

Looking for ways to improve access to research studies in ILD

 Wanting to set up a network of clinicians to promote offering ILD and other respiratory patients the ability to register for research studies. These may emanate from any of the hospitals in the southwest, but may also be from around the UK, or international clinical trials.

It is.necessary to involve clinicians as their local hospitals may need to be involved in actually qualifying the patient for the study and often in collecting data and monitoring the patient.

 Another day in the life of an IPF Patient.

Trump no longer in the White House. Not sure though that Biden is any better for the world. 

Here, our government seems to have rolled out a good vaccine programme but I think it’s more by luck than judgement. 

I seem to be pretty much the same as before, but I am noticeably weaker. The pain in my back is bad if I attempt any form of walking. The FVC readings seem to be pretty stable. I’m doing home spirometry and sending figures in once a month.

The support groups seem to be progressing OK, and I’m involved in more and more things at the University.

I’m involved in the PPI group at the Academy of Nursing, Through that am on the PIME group at the Medical School. 

Separately I’m in EPIC which is the PPI group for the respiratory research at the University.

Also involved with Plymouth University through WellConnectedUK a charity group with an office in Plymouth.

Not sure if I’m influencing too much, but they keep asking me now to join things, and for my opinion on things.