Health Service coughs up

Today I went here. No, not to see some sexy firemen – this is the new sleep centre for the Royal Brompton in London.


The train assistance didn’t quite work out so well as one train didn’t have an accessible carriage. Then on the one home the accessible carriage had its doors jammed stuck so there was no access to that part. I sat by the doors.


What happened in between the two journeys was brilliant. I can’t cough as my muscles are too weak. A machine exists – a cough assist – which help you cough and get rid of the gunk that sits in your throat. It can save you going into hospital or choking especially if you get a bug or chest infection. They are like gold dust so I didn’t think they’d give me one as they cost about 4K. I had a good assessment and actually came home with one! Amazing as I’ve told my docs I’ve been choking for years and never even got an assessment. I am very very happy!


I dream of sleep

For a many years I have been unable to move in bed. I can’t turn over or move, I can’t turn my head or shift my weight. I can’t speak clearly as I have a mask over my face attached to my ventilator. I get open sores on my face sometimes, lots of pain and sleepless nights.

I’ve been applying to the NHS for a year now to have a specialised profiling/hospital bed. I have finally got to the point of them giving me a home trial… possibly.

My drawing tonight is a celebration of over a year struggling with sleep and hope of comfier nights.


NHS communication – does it exist?

I am suffering from a disease – it’s called NHS irritablitus. It starts with a nervous twitch every time I see a letter from a hospital and is shortly followed by uncontrollable outbursts of the Victor Meldrew nature. My blood starts to boil, despair sets in usually followed by mutterings concerning incompetency. I get a terrible sense of doom and money wasting. This is followed by terrible guilt that I could be denying someone a critical appointment or using up the valuable time of staff whilst they sort it out. All but one appointment (of many) in the last 5 months has been messed up by three different NHS Trusts. It’s annoying and stressful.

That is the problem, the Trusts don’t work with each other. The NHS appointment system and methods of communication are a shambles – at least in my experience. Let me fill you in on the highlights.

The Oxford Radcliffe NHS Trust have been moving over to on-line patient records (as opposed to stacks of papers that as a patient, I have to carry from one department to the next which is rather medieval). My cardiologist didn’t have any notes for the previous year – they had gone into a black hole. They also had a new electronic appointment system which kept sending me out appointments for seeing consultants on different days (in the past it has always been that I see two people on the same day – which means one trip and hotel stay in Oxford). This happened a few times in succession. I would get 2 letters (mailed separately), one from each department, and I had to try and phone around to coordinate them on the same day.  I explained to my lead consultant that it was getting difficult doing an overnight stay and could I see someone locally for my heart scans (which would also get around trying to coordinate appointments). I didn’t get a yes or a no, so we just left it as a ‘let’s see’.

Now, in the meantime, the Royal Brompton were double booking appointments and all sorts of things. One specialist said they would cancel my next review as it was too soon –  but that didn’t happen as I got a phone call from the department asking why I’d missed my appointment and hadn’t showed up.

Along side this I had been seeing my GP for a bladder problem and they said they would refer me to a specialist at Maidstone hospital for an ultrasound. I was expecting a letter saying ‘your appointment for an ultrasound is on x date’.  Here is how this story unfolded:

29th Feb:

I received a letter from Maidstone and Tunbridge Wells NHS Trust (standard issue) saying they would be sending me an appointment letter!! Eh – the NHS are sending letters to tell patients to expect a letter? It explains my GP had referred me and to ensure I didn’t have to wait too long whoever had the shortest waiting time would see me but I could be seen by someone in another team. I was referred to gynaecology. This seemed sensible seeing as my pelvic organs need checking over.

7th March:

Same letter arrives only the word gynaecology had been replaced with cardiology. I was confused. I try to find out more – the number it says to contact goes to answer phone.

14th March:

An appointment date for an Echocardiogram for 13th April. Ah now it makes sense – there were two referrals. This is the one Oxford requested for my annual heart scan. Only I’d just had one at Oxford and wasn’t due another until 2013. Doh. In the meantime I had tried calling the ‘help’ numbers for appointments and they didn’t understand. I leave a message on the cardiology number to say I need to discuss the appointment. They called back but not on the same day.

19th March:

I received this letter a few days later. I panicked. It was from Urology telling me to go for investigations the next Monday – 26th. The letter gave info for males and females and about tests other than the ultrasound. These were tests that I couldn’t do because of my impairment.   Of course the appointments are made without looking at a patient’s notes.  I was going away until the day of the appointment so called the number – the department had no details of anyone with my name going to their unit on that Monday. They said that gynae notes and appointment details are not kept in their department. I couldn’t speak to anyone at gynae because the secretary was on holiday. I spoke to a lovely lady who said the only thing she could think of was to print out my own patient notes about my impairment, to hand deliver them to her and she would walk them to the gynae department. I am lucky we live near the hospital.

26th March – I aim to go to my appointment for ‘tests’.

I get a phone call – in light of my patient notes and needing specialist facilities (i.e. access and suitably qualified staff, hoists etc), they are reviewing what tests are best and finding somewhere to do them – possibly involving booking out a theatre for maximum space.

I go back on a waiting to find an accessible place list! This should have been sorted out months ago.

I also get a letter dated 23rd March

This letter says I have an appointment at a cardiology clinic on the 30th of April. Another one to cancel as it’s to discuss the scan I don’t need.


I phone the appointment people – they tell me to phone cardiology direct and give me the number. I phone and it is on answer machine. I leave a message and they call back an hour or so later.

I explain I need to have an echo scan once a year and need to change the date to one in 2013 not 2012. Apparently I can’t do this. The referring Trust (Oxford) can only ask the GP to refer me to my local Trust about ten weeks before they want it done – or it will look like waiting times have gone up to a year. What the…..  So I have to phone Oxford in 2013, ask them to call my GP, who will write to the hospital, who will book me in within about ten weeks and post the results back up to Oxford.

What a complete waste of time. She cancels the appointments.

Another messed up NHS appointment

My specialist is in Oxford so we book a Holiday Inn Express for this yearly trip.

It,s quite important as my heart gets monitored and its the only team who actually start the review from an Independent Living perspective.

This involves two appointments. Usually I get to see cardiology first to gather up the data then trundle the results down to the Neuromuscular team for their appointment.

This year I had to spend ages on the phone because they forgot to book the second appointment. Both were then rescheduled for a week later.

The other week a letter came to say they had moved cardiology to a few days later. Also that if you needed to change it you should e-mail in preference to calling because they were installing a new booking system.

Good job we hadn’t booked accommodation! I e-mailed and explained I needed both appointments together on a Monday. My husband was already going to lose a days pay booking the Monday of work.

No reply. A week later I mailed again. The reply simply said ‘call the appointments number’ – yep the one they said not to call.

So they think I’m going in a few weeks on two separate days … frustrating.

Update: An e-mail arrives to say they moved both appointments back to the original day – but that’s no good because hubs can’t now take time off and it’s a bit late to organise a hotel… flipping hec.

Sleepless in Seattle

Ok so technically I should call this post Sleepless in London – or even Night of the Living Dead would more accurately reflect the experience that is the Sleep Study. Then again, at times it was comical… so here goes…

Quick catchup.

This was the first one since I started using a ventilator (BIPAP) machine to breathe for me at night. The machine blows air into me via a face mask. My lungs are that of an athlete – but the mechanics have failed (muscles defunct).

Why overnight monitoring?

You know when you wake up and can’t remember where you are or what day of the week it is?

Add in:

  • an intense fear and certainty that a burglar is somewhere in the house yet at the same time your head is telling you that is ridiculous
  • feeling drugged like you had one bottle of wine too many – chilled but about to slump into a coma
  • saying things that make perfect sense – but only to you

all making an appearance during the night. One things for sure – this seemed suspiciously abnormal.

Then I’d huff and puff all day feeling like each breathe wasn’t worth the effort , pop on my vent and reach the same drunken mind altering state within the hour.

It’s the same state people strive for who are turned on by PVC, whips and strangulation…. apparently *cough

So … on with the post (I’ll come back to sex later on).

Connecting up

We arrived with the kitchen sink and were shown our room. My sister in law was in a new hospital with her little one – and posted a picture of this huge plush room with en-suite. This is what we got in comparison!!


That’s hubs changing the channel as people had nicked the remote :-/ and yes the room is that yellow and only 3 foot longer than the bed.

Access for wheelchair users

Well obviously changing the TV channel is out (and we were there from 3.30 until 10.30 ish the next day) and there was no level entry shower facilities in the ward area (the one in the accessible bathroom at the end of the corridor was broken). I was told the sleep study area had an accessible bathroom next to the room but it was small and had no grab rails if you needed them. Not that it mattered because once they connect you up at 8 (or 9 if you smile nicely) then you can’t disconnect so everyone has to use a commode (painful, awkward and my dignity trickled away in one piddly audible moment 😦 ).

How many nurses does it take to demonstrate a call button

A smiley nurse popped her head in and demonstrated the call button aeroplane style. The big red one for the alarm and the little one right under it for the light and you can move it around like so… (demonstrates lifting and putting down so said item – twice)… Oh my life, yawn.

A bit later another one wanders in ‘this is the…’ we nodded politely and saw the whole routine again. Thank you very much that’s great (not that I can press it or that it would reach the floor where hubs ended up sleeping).

Nurse number three got a a less than smily welcome as she launched into ‘this is the…’ finishing with ‘oh let me start again, ‘my name’s …’.


Scrabble anyone

I think she was bored as she struck up a conversation of the merits of the 4s and her mirror screen protector. I also suspect she was sponsored by Zynga?

Still, we couldn’t talk iPhones all night. The doc had blood to suck out of me and I had a bed to get into with more buttons than an Apollo rocket.

It took about 2 hours to ‘get into bed’ and I departed for planet Gaga.

Meanwhile TOSCA (below) stored the data for another doc to have a quick squint at in the morning. This is a clip on your ear, heated to Sahara Dessert at midday temperatures probe that measures Oxygen, Carbon Dioxide and your pulse rate. A good figure is 98 for O2 and about 6 for C02.


With a patient screaming, my air bed mattress buzzing with the aggression of a killer bee and general freaky noises – sleep consisted of about 40 winks.

On the plus side I was fairly pain free in my lovely squishy bed.

Boy did I feel like S*#t in the morning. Hubs too. TOSCA gave up recording at 7.30 am but I stuck with him for an hour to see what he would say once I’d got out of bed. I wanted to experiment with different breathing techniques and observe the figures.

I googled the manual and read up about the device – because I could.

The verdict

I am breathing too much! People with mechanical failure retain CO2 – especially at night and during dream sleep when the body totally goes floppy. The vent keeps them normal by keeping good breathes going all night.

However, my vent was taking me past normal – and making it really low. It’s like when you hyperventilate but without the panic (or the quick shallow breath in/long breath out breathing that some find enhances sex – whichever you relate to more 😉 )

My Swiss cheesed brain now thinks a low of 2-3 is normal during the day and makes me feel ill.

So what now?

I’ve got to use different vent settings – but the effect makes me feel like I’m being strangled so this is going to take time and mind control not to freak out.

So with advice on settings we trundled home via a cab that smelt like a kennel and a train that oozed happy staff (no really – train was so good, top marks).

… one more thing

If we chatted on Twitter you will appreciate why the food wouldn’t have made the next round of Masterchef. Cue the Monica scowl.

Maidstone hospital you are useless.

I lost my appointment letter. I’m due to see someone sometime this week. I looked up the hospital website having had no luck phoning the always busy switchboard. Website says call the clerk on the number on your letter – there was no number on my previous appointment letter. I call switchboard and they put me through to an answer machine that didn’t say it was for respiratory. So I’m going round in circles… Bah.