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

XXXX

 

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.

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#amazeballs – Never Mind The Bo##ocks

It’s a year since I had all that unfortunate business in the ‘downstairs department.’

Originally, I went for a check up to distract me from waiting around for heart surgery. ‘It’ll re-assure me’, I thought, after thinking ‘it doesn’t quite feel right’ for a while, although I already knew I had a torte (undescended testicle) and that seemed OK. I’d been reassured several times I was still fertile and could have children (leaving me feeling weirdly, and rampantly, heterosexual).
The Doctor – a young and very polite trainee – was terribly, terribly embarrassed by the whole thing. I’d gone with a list of things including repeat prescriptions, request for flu jab, and finaly thecheck up. Clearly, doctors need to feel another man’s genitalia a lot more than they do in training.He waited until the very end of the consulation befoe donning blue latex gloves ‘for that other thing you mentioned’ and asked me if I wanted a chaperone, which sounded quite glamorous. He fiddled around for a while and then went out of the room and came back with a more experienced colleague who introduced himself with his hands round my nuts saying ‘this is an unusual way for me to introduce myself’. ‘Not for me’, I nearly quipped. He then asked if I could get an erection. ‘What, right now?!’ I thought before letting him know that I had no problems performing thank you very much. They sent me for an ultrasound’ ‘just to be sure’.
The appointment came for the day I wa due to be ‘ringholder’ for a friend’s wedding vows renewal. They cover you in KY jellyfor the ultrasound, so I figured someone could be in for a fun night later. We know what straight men are like at weddings.

Eventually I was given an emergency appointment with my GP – which I knew was a bad omen as you can never get an appointment that quick usually. He told me that to expect things like this ands the heart surgery ‘at my age’ but that everything gets better when you’re in your fifties. At one point he paused the consultation as another patient wanted to know if they’d left their bag in his room. He shook my hand, wished me luck, and told me he hadn’t had any of his patients die from this. Which was comforting.

I was offered surgery pretty quickly, and as the Macmillan nurse felt my crown jewels, I learned she knew my mother – formerly also a Macmillan Nurse. Not the most comfortable of conversations to have whilst undergoing that sort of exam. ‘We never did physical examinations’ my mother told me later, leaving me unsure if I’d been molested or not. They mark which testicle to lop off with a big blue pen, and asked several times ‘which one?’ Fortunately, I kept giving the same answer, and did the marking myself, commenting the right one was always my least favourite anyway. I was offered a ‘replacement’ but, disappointingly, that didn’t include my request for a glitterball (bit or razmatazz, I thought) or even a dongle – ‘That could be really useful, I thought, like you do when you see a pineapple corer or other kitchen item you know you’ll never use. Like my pasta making machine.

The oncologist offered me a single course of chemotherapy to reduce the (slim) chance of a recurrence. That wasn’t pleasant, but I’m glad I did it, even if I ended up like a pin cushion following the pre-treatment blood tests they carry out (I counted 20 injection points where they tried to get blood from). My brother accompanied me, and fainted in the corridor.

I was in and out of hospital within a day, and told friends I was walking lop-sided after the operation. The outlook for this thing is very good, apparently, apart from the annual facial horrors of the well-meaning fun ‘charity fundraisier’ Movember, where guys can show support for testicular and prostate cancer by wearing the most ludicrous and terrifying facial hair furniture. Why not just grab a mate’s gonads for a good feel and check-up instead? At the hospital today, I saw a man attempting suicide, trying to jump from the top of the car park. He was by the entrance where I left after the surgery – ironically, next to the ‘mother and baby’ ward. He was prevented from jumping by 3 or 4 burly, but caring, security guards and paramedics. Just another reminder of how difficult, painful and fragile life really is.

For more information, try:
www.everyman-campaign.org

Macmillan Cancer Support