Goodbye St Marks, Hello QMC

I’ve made the huge decision to transfer all my medical care from St Marks in London up to Queens Medical Centre (QMC) in Nottingham. St Marks is the UK’s leading specialist bowel hospital and I’ve been a patient there for the last 8 years and despite living in Nottingham for almost 6 of those years I have continued to travel down for clinic appointments and tests. But all of my hospital admissions have been at QMC and this has meant that over the last 5 years the team in Nottingham has patched me up when I’ve had emergency inpatient stays and then handed me back to St Marks for follow up. This has resulted in me effectively becoming trapped in a no mans land where the team at St Marks never see how truly unwell I am and the team in Nottingham see it but can’t treat me because I’m technically not their patient.

The last 12-18 months I’ve become more and more unwell which has made travelling independently down to London almost impossible and then when you add in Covid-19 it has become harder still. I can’t drive down myself because it’s too far (I get tired driving more than 20-30 minutes at a time) and Hubby refuses to let me use public transport because I’m in the high risk vulnerable group that’s been shielding during the pandemic. So I’ve decided that it makes sense to have all my treatment and follow up locally even if that means leaving my beloved team of specialists at St Marks. This is something I’ve been thinking about for a while but I‘ve just not had the courage to make the move. But having had so many admissions recently the gastro ward at QMC has become like a second home of late and I have every faith that the team there will look after me now that I’m officially theirs.

Whilst this feels a bit scary I also feel like I’ve taken back some control and that I’m actively working towards getting better instead of being passive in the process and hoping that one of the hospitals would take the lead. The nurses on the ward in Nottingham are amazing and I know that no matter how ill I get they will always look after me but it will take time to develop the trust in the consultants. One of my big fears is that if I end up needing surgery will the surgeons in Nottingham be the best people to carry it out? They won’t have the volume of cases that the surgeons at St Marks do and so may not have the same experience and surgical outcomes. But I‘m trying not to let ‘what if’s’ make decisions for me and I will cross that bridge when I get to it. I have met the colorectal surgeon during one of my recent NHS ‘mini breaks‘ and he has said because of my complicated history he wouldn’t want to operate on me unless it was absolutely necessary so at least I know he’s not wanting to rush into anything.

I don’t know what the future will hold but already I have an endoscopy and an outpatient appointment planned over the coming weeks so I’m guaranteed two trips out of the house at least!

New car smell

After everything that’s happened over the last 5 weeks not many days have been good days but today was. I will write a blog post about everything that happened but that’s for another day! Today I went to pick up my new motability car and got to breathe in that new car smell. I am now the proud lease holder of this lovely Volvo XC40. To be honest, part of me wasn’t sure whether to write a blog post about getting the new car with everything that’s been going on with the disability benefit reforms. There’s been so much written about motability cars on social media but a lot of it is misinformation and hate and that made me nervous to write this post. But I figured that most people reading it are friends and family and understand my need for the car. But for those that don’t let me explain a bit about how the motability scheme works. I am lucky enough (or unlucky enough depending on how you look at it) to claim PIP- personal independence payment. This benefit is designed t...

The germs have got me 🦠

Being on azathioprine, influximab and prednisone is helping to control this recent Crohns flare up. But unfortunately they work by wiping out my immune system making me more susceptible to all the bugs doing the rounds. I refuse to stay at home and be held hostage by these meds though- for me they are there to give me my life back, not to make me a prisoner in my own house, so the inevitable has happened and I’ve got a cold. ‘It’s only a cold’ you might think, but with no immune system to fight it off this cold has made me pretty poorly. Yesterday I couldn’t get out of bed and felt so, so ill. I was coughing and struggling to breathe so I’m pretty sure I’ve got a chest infection too. But I can’t confirm that because apparently even being immunocompromised with a suspected chest infection is not enough to see a GP these days! I spoke to the receptionist at the GP surgery this morning who told me that all the urgent appointments for today were gone (and this was at 8.25am, aft...

Disability benefits cuts

So in Rachel Reeves spring statement earlier this week it was confirmed that there will be massive changes to the benefits system including the way that PIP is assessed and changes to the health element of Universal credit. As someone who is receipt of both PIP and ESA disability benefits I find this whole situation… 🔲 terrifying 🔲 baffling 🔲 rage inducing 🔲 disgusting 🔲 [all of the above] I honestly cannot believe that a LABOUR government is looking to balance the books of the country by taking money from some of the poorest and most vulnerable in our society. This is the sort of thing I would have expected the Tories to do but when I voted Labour I honestly thought that not only would they look after and protect the neediest but they would actually make things in our society better and fairer. How wrong I was. Looks like I’m going to have to get some ‘Fuck Labour’ merch to go along with my ‘Fuck the Tories’ stuff I already own! Now I do b...

More than just a bag lady

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