Lukas Scott Is Required – On ‘a positive change to the care of future patients’ …

Lukas Scott is required

Lukas Scott is required

So I had a few days in London. It was great to meet up with many friends, whilst the world found out about the massacre of Charlie in Paris. I saw plays,mime, got a hot shave and my hair styled in Mayfair, as well as a bit of shopping at Fortnum & Mason. I stayed in accommodation opposite the BT (Post Office) Tower, infamous for housing the WOTAN supercomputer in The War Machines serial of Doctor Who, which summons people to serve its will – hence ‘Lukas Scott Is Required’. These are the sort of things people do when they’re in London – a world away from when I first went down in the  1980’s to meet friends, or set up home there in search of independence and whatever ‘gay liberation’ London in the 1990’s had to offer. It was the time of AIDS, and homophobia, and a time when I dreamed that theatre would help me make a positive difference. That things could change, and imagination and creativity were weapons of resistance and progress.

I left London with a strange sense of loss – of some of my own endeavours – it’s been a different path chosen to the one originally planned, of health issues – it was an exhausting trip, but most tellingly of friends I’ve lost, probably a theme that’s continuing from my last post. I came home to a slew of letters relating to health conditions, but was most pleased by the result of the complaint I made regarding a failed MRI appointment at the end of last year – the text of the original complaint was included in my earlier post  I will Be Heard. Most importantly, it’s good to know I have changed local hospital policy in a positive way, as acknowledged in the letter:

I am pleased to see that this has clearly demonstrated that your valuable feedback
of your experience has made a positive change to the care of future patients

The full text of the response to my complaint can be read in the following link, which deals with particular points I made not only about hospital processes and procedures, but also staff attitude and how patients are treated- uch letter. There are also some interesting points about ‘out of hours’ working and treatment.

Additionally, I had copied my complaint in to the Care Quality Commission, who responded by outlining further avenues if I was nto happy with the response to my complaint, including: (the Parliamentary and Health Services Ombudsman)

I have included the correct links, as half of the links supplied were actually incorrect. Tellingly, the PALS website reveals how low a priority patient feedback is for funding and support:

PALS online is no longer operational
This site’s content was provided by the efforts of unpaid contributors. Technical support and hosting was also provided by the site’s developers for a number of years without any financial contribution from the DoH. Despite our belief in the importance and value a national Patient and Advice Liaison Service online resource provides, we can no longer support a resource that should be a responsibility of the DoH.

Thank you to all those who have actively contributed and produced thousands or articles, research and reports, and contributed to creating one of the largest NHS service and associated health related links databases. Finally, we are proud to have helped hundreds of thousands of patients, their friends and families, carers and health workers who have used PALS Online’s office directories, signposts and guides.

I have, of course, made the CQC aware of their errors….
Must go. Lukas Scott Is Required ….

I will be heard: On being a patient, a guinea pig, and a stroppy queen

guinea pig stroppy queen

So, finally, I got round to writing a letter of complaint following being denied an MRI scan in November because staff didn’t have important information on the make and model of my heart valve to hand. The following is the letter I wrote, with a copy sent to the Care Quality Commission:

Dear [Name of  Chief Commissioner]

I attended for a MRI appointment on XXXX November at XXXX Hospital, following a referral  for loss of field vision. I was denied treatment because staff were unable to access details on my hospital notes regarding the type of aortic heart valve I had inserted following emergency surgery at XXXX Hospital in July 2013. I did request that they contact the cardiology unit for this information, or that I could do this myself if they had a contact number, but was still unable to be treated. The MRI nurse himself was polite when informing me that protocols dictated he could not undertake the MRI as there were not enough resources if anything went wrong, but it was not helpful for me to be told by another member of staff that I should know this information because ‘if it was them, they would want to know what was inside them’.

Staff suggested I contact my GP to rearrange, and the Radiology Bookings Team asked for the make and model details of my valve to be faxed to them. I requested, that they access this information on my hospital notes, and gave my permission for them to access these notes or to liaise with my cardiologist Dr XXXX, surgeon Mr XXXX, and/or my GP directly in order to get this information. When I spoke to my GP myself, he agreed to fax the information, but could not understand why Radiology staff were unable or unwilling to access this information themselves. He was only able to supply information which XXXX Hospital themselves had given him, and was available on my hospital notes.

There may be reasons for this, and I would like further information on why this is the case, and also what action you will be able to take to ensure this does not happen again? This was an unnecessarily wasted appointment, and has delayed my diagnosis and treatment.

  • Did staff have adequate access to my notes, or is the IT system inadequate? Is there a training issue here to help staff access relevant material, or does the IT system need to be changed?
  • Why were staff not able to problem-solve and retrieve the information from any of the sources I suggested? Is there a culture or attitude within the Hospital Trust that does not support or encourage this? Again, is this a training issue?
  • I was told that there were only two staff on duty, which would not have been enough ‘if things went wrong’. Is this a resource issue because the MRI was scheduled at the weekend? Would I have been able to receive better treatment if my appointment had been on a week day?
  • Do current procedures not arrange for important information such as heart valve details to be easily accessible between departments? How will you change procedures to ensure this happens?
  • Are there important medical details missing or inaccessible on my medical records? What safeguards are there to ensure that if I needed treatment the relevant information could be accessed?

I am currently awaiting a re-appointment, and have found this experience unnecessarily distressing, anxiety provoking and frustrating. I was told that this is not an isolated incident and may ‘often’ happen. I see no reason for this to be the case, and expect a better level of service from my local hospital.

Please confirm that my notes now accurately display relevant medical information, and I would appreciate your responses to the concerns this experience has raised.

I have had very positive experiences of XXXX Hospital previously, but on this occasion, I feel let let down by the processes in place, and the attitude of the Trust.


Yours sincerely



On the other hand, I’ve just completed a 7 week online patient feedback research project for Macmillan. It was partly as a result of this that I felt empowered, and angry, enough to write the letter above. I learnt that poor treatment is unacceptable, and needs to be challenged. The project has been amazing – sharing experiences with other cancer patients and exploring issues of access and diversity. It’s changed my view of the whole experience, and helped me to re-process a traumatic and frightening journey ‘from the other side’. Although the notion of an ‘online research forum’ seemed dry and unappealing at first, we were given a range of fun, challenging and engaging tasks to explore how our needs were and weren’t met, and what changes could be made for other patients. I’m choosing to share some of my responses for the final week – a period of reflection and summarising the process and our viewpoints (I may have made some edits/changes for the blog):

your shout: anything that might not have been covered?

My experience has been one of multiple health issues, not simply cancer, and I think this could be addressed more fully. How do different departments communicate with each other. Who is a principal point of contact for the patient?How is information transferred/recorded between departments.?
I work as a counsellor, and I’d be interested in more research/information on the short and longer term impact of cancer diagnosis, and approaches which patients find help them dealing with it at different stages.

a cup of tea with your Dr – what I would say to my GP if given the opportunity to sit down with a cup of tea, and all the time I needed

NO, I don;t need a wife to help me feel batter, so don’t make assumptions about my sexuality.
When you need to examine my body, be professional and courteous – if you have hang ups about touching another man’s cock and balls, keep that at home and out of the consulting room. It’s not that easy for me, either.
The hoo ha about arranging emergency appointments, but not being able to tell me why, only made me more anxious than I was originally.
If you’rein the middle of a consultation giving me a diagnosis of cancer, don’t pick up the phone to answer a patient’s query about if they’d left their bag in your consulting room.
Thank you to the staff, doctors and consultants, who did take the time to show empathy, care and to understand some of what I was feeling. and to take time to understand what was happening.
Remember my name. I’m not done yet.
A joke or two along the way actually helps.

message in a bottle: if you were to send a message ‘out there’. what would it be?

I would like to tell the general public….many cancers are treatable. Don’t be afraid, except by politicians who dismantle or undermine the NHS and its treatments.

I would like to tell other people who have been diagnosed with cancer … hang in there, make use of the information and support at hand. You don’t have to be ‘brave.’

I would like to tell the family and friends of cancer patients …. It’s not just patients who are affected and who need support. You’re an unpaid healthcare system – what you say and do makes a difference.
I would like to tell employers … my employers have just stopped access to our Employee Assistance Programme, which provides counselling support. It helped me through a difficult time, and assisted my return to work more than any of the HR or OH rules and regulations. At a time of great uncertainty, I needed structure and support, and felt a pressure to return to work too soon because my pay was reduced.

I would like to tell Macmillan …  I’m very proud of my family involvement with Macmillan, and my respect for them has improved greatly.
I would like to tell the government ... Stop privatising the NHS, value its greatest resource more – the people who work for it. Don’t use people’s health as a political football – it damages our well-being and creates a negative and self destructive, fearful and anxious culture.

If there is someone else to whom you want to send a message in the bottle, just say whom and what your message would be!

A big thank you and hugz to all the participants . You’re amazing, honest, thoughtful and brave people.It’s been a privilege to spend some time with you.

The three most important things I have learnt are:

1. I’ve been very fortunate in my cancer journey, both in terms of diagnosis, support and treatment services.
2. Nevertheless, the journey was much harder than I had given credit to, and sharing experiences with other cancer patients has allowed me to come to terms with feelings and experiences I hadn’t owned up to. It’s provided a source of healing and care I hadn’t realised was important.

3. Sometimes you need to stand up and fight, sometime you need to lie down and take a nap.


And the best thing about the project, and the hope that I have for writing a letter of complaint, was a very simple thank you response, ending with one important line:

‘You will be heard.’

Too goddamn right.

It’s only a little prick, sir …!

One of the side effects of heart surgery and having a loud, mechanical valve thumping away in your chest,  is having to become a long term user of rat poison/warfarin. As I’ve written before, it deprives me terribly of cranberry juice,  and  leaves me a ‘responsible’ drinker (with my reputation!). The medication is aimed at preventing nasty blood clots, thinning my blood to an INR range (no idea what it means) of 2-3. According to my dentist, they are now looking to replace warfarin but all alternative treatments are ‘too expensive’. It needs regular monitoring, which has meant frequent and inconvenient trips to the hospital. The Haematology Unit there is able to conduct a short fingerprick test, which is less painful and less complicated than a full blood test which becomes necessary if you opt to go anywhere else. I’ve had so many blood tests recently, my veins have become quite difficult to access and the warfarin itself means I bleed like a stuck pig. Dignity, always dignity.

So it seemed like a great idea when the haematology nurse suggested ‘investing’ in a home test fingerprint kit. No more hospital visits. No more needles. Much as I loathe the notion of an NHS becoming privatised – which is what a scheme such as thiscould become the start of – I am willing to invest in my own health. So the manufacturers, Roche, offer a home test machoine for the *bargain* price of £299 – at a reduction of £100 – which can be paid for in 24 interest free monthly installments. Now, that ends up being cheaper than having to pay parking fees or bus costs over the same period, so it is becomes appealing, particularly for a life-long ‘condition’. There is a catch – your GP has to agree to prescribe the testing strips on the NHS, otherwise you wind up having to pay 6o odd quid for those also.

That doesn’t sound a problem, right? Quick chat with GP, strips on prescription, I can order the machine and life becomes so much simpler. But, gentle reader, what a world of fantasy you inhabit! Initially, I was told by GP reception that I have to get the strips from the Haematology ward. After a call to them, I’m assured that isn’t the case and it’s the GP who prescribes them, but am urged to contact the maufacturer Roche for all the details. I speak to a helpful lady there who tells me it’s a clinical decision by the GP, but that most of them ‘see the benefits (which sounds a little Orwellian). She kindly sends me a fancy-pants glossy brochure and expensive dvd advertising the testing kit, delivered in a box far, far too big for its contents. So I go back to the GP, who’s very helpful with everything else (I went bcause my scar had started bleeding and I needed some magic antibiotics) but on this matter she’s been told by the Practice she ca’t prescribe them without ‘Something from the Haematology Department. It’s not, I’m told, just a problem with the surgery – perish the thought! – but a ‘Coventry wide problem’. ‘Is that noise your heart?’ she asks , drawing attention to  my Thumping Mechanical Valve. ‘I thought it was a clock’. Tick. Tock.

Meanwhile, my erstwhile cousin makes enquiries at her hospital, and it’s clear this shouldn’t be a problem. I’ve now got my gander up (which you wouldn’t want to see. It’s like a camp Incredible Hulk) so decide I’ll take the fight straight to the Dark Tower itself and write to the newfangled NHS commisioning board/group/body, the Clinical Commissioning Group (CCG):

 I am a long term warfarin patient and was recently given details by Walsgrave Haematology Unit of the option to buy a home testing kit. My GP has said coventry surgeries are ‘not allowed’ to prescribe XS test strips unless they have a letter from haematology instructing them to do so. I have contacted both the haematology dept and the manufacturer, Roche, who have said it is a clinical GP decision. In addition, I understand that you have allocated a budget to help facilitate this Both my GP and haematology nurse consider home testing useful, both because I am a long term warfarin patient, and because fingerprick testing is better for me than blood collection through a needle, which can be more problemmatic for my veins. I am frustrated that I am not being supported in an exciting and cost/time effective initiative which will bring me huge benefits, and which I am willing to self-fund through investment in the self-monitoring Meter. Additionally, I see benefits in this freeing up NHS testing resources.Can you clarify how I can access these test strips on prescription and what your guidelines on this are?

I’m convinced this will be lost in the bureaucracy of the NHS but lo! am pleasantly surprised a couple of days later to receive a helpful and clear reply:


Dear XX

I have been asked to respond to your query regarding coaguchek testing strips. Firstly apologies for any delay but this message has only just come through to the CCG.

Coaguchek XS strips are now allowed in Coventry on GP prescription but, with agreement with the haematologists, who wrote the protocols, only when the GP is supplied the guarantees that the patient has received the appropriate training and that the machine is going to be regularly maintained. We have to insist on this as we must ensure that testing is appropriate, as getting the dose wrong can result in significant patient harm, and that the test results are accurate at all times.

 There should be no reason why your specialist should not have provided this and I will contact them to ensure this. In the meantime please ask your specialist again.

 I apologise for any delays.

 Kind regards


Which, aside from the odious ‘kind regards’ signature, settles things ONCE AND FOR ALL.

I have appointments with both my GP and the Haematology Unit on Thursday. So we’ll see how they respond in the light of my Flaming Torch of Knowledge…..but for the moment, I’m feeling heard and vindicated. And wondering what The Training they refer to might be. I hope it doesn’t involve role-playing, or Name Games. Or some sort of blood testing exam. With any luck, they’ll just give me another copy of that swanky brochure and expensive dvd…



ACSMA is the Anti-Coagulation Self-Monitoring Alliance and campaigns to support self-testing, and for home slef testing to be provided on he NHS. It lists the benefits for individuals and theNHS on its website, and suggests how you might help.

My heart got ripped apart three weeks ago today, so happy anniversary

I blame the apple turnover. I’d been fine until then, awaiting a scheduled heart operation. I’d been out shopping with my folks for their anniversary the following day and also made a bara brith and an american spiced carrot traybake for visiting relatives. I must still have their anniversary card somewhere…
A sudden tightness and pain in my chest, and I collapsed onto the floor unable to panic. Flooded with panic and alone in my flat I managed to phone my parents and ask them to get an ambulance, explaining I couldn’t breathe, both arriving with minutes and before sinking once more to the floor I had the foresight to at least open my front door. I was terrified I’d lose consciousness and no-one would be able to get in.
It gets hazy after that. I began throwing up. Mum told the ambulance we needed ‘blues and twos’. I passed my neighbour downstairs as I was taken out on a stretcher, saying ‘oh, hello….’ Holding onto the oxygen mask like a scene from Blue Velvet. Ambulance rides are bumpy and uncomfortable and I don’t know why I thought it would be different. Getting mum to phone work and explain what was happening so they could make arrangements. Trying to explain to my parents where my newly signed will was kept.
‘This is all very Casualty’ I thought, as we pushed through the double doors at A&E, to be met by the nursing team. The ambulance staff stayed to hold a drip for me, I kept throwing up and then apologising for it being ‘unseemly’ and kept getting asked my name and if I knew where I was. I told the nurse I couldn’t have my surgery yet because I hadn’t had my hair done and it needed touching up with red highlights.
‘Sometimes the anaesthetic turns it pink’ she said. ‘Oh I’d quite like that …’ I replied.
My parents had a conversation in the corridor with the surgeon. I can’t remember what he said to me except that they were going to operate immediately. ‘Oh that’s nice’ I think I said. It’s only now I’ve found out my aortic valve had ripped apart.
I was introduced to the anaesthetist, an eccentric but kindly man who made me laugh before wiring me up to all sorts of drips and I was taken into the operating theatre which was full of people and very, very bright. Like in The X Files when people get probed by aliens. Which may have been what I was thinking as the anaesthetic kicked in and a handsome doctor who looked about sixteen told me everything would be OK…
Three weeks ago today. I still owe my parents an anniversary card. And, along with the amazing NHS and ambulance staff, so very, very much more …