"Unhappy with GP care for chronic fatigue"

About: Leeds PCT Seacroft Hospital

(as the patient),

I am a Black Dyslexic (so please forgive any and all spelling and grammatical errors) Chronic Fatigued man, so just in case this is ever read then you could be all or any of the previously mentioned.

So what follows is a list of the contents of my story. Hopefully you can either ctl+F (on a windows keyboard) or cmd+F (on a mac keyboard) to find what in my story interests you: eg crt+F then type '1' in the Find box gets you to "1. Defining Chronic Fatigue (using my example as reference)" click on Next tab Will get you to Defining Chronic Fatigue section of my story.

CONTENTS

1. Defining Chronic Fatigue (using my example as reference)

2. Poor Practice from my GP practice

3. Poor Practice from PALS

4. Poor Practice from the Complaints team and senior manager

5. What I want to happen next

6. Ramifications of my story to NHS in General (my thoughts)

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1. Defining Chronic Fatigue (CF) (using my example as reference)

I must start here because I am astounded about how ignorant the NHS in general is about CF. I have spoken to stomach and skin specialist who thought because I was there in front of them that meant I was cured!

I say that you are never 'cured' of CF, it is more like Alcoholism.

I joined a specific GP surgery because its GPs assured me that it upholds its 3 mission statements via action: it proactively finds new ways to solve patients ailments in a patient focused way. So I believed that when I joined we had a verbal agreement that it would proactively find some way that I could manage my Chronic Fatigue.

• Must be fatigued for at least SIX months

• Only a CF professional can diagnose that you have CF

• CF Diagnosis is much about you life before fatigue as much as it during fatigue; general like me you are “unhealthy active” before fatigue- in my case my daily routine would be that I wake up ran approx. 5km (well at least for 30mins due to time constraints) wash, dress, eat, do a day’s work either do a sport or dance in the evening if not both then repeat the process the next day. At long as I obtained four hours of sleep I could catch up on all the sleep I missed out the few evening I did nothing (averaging 8 hours a night). I did this for years without ever feeling an ache or tired. Though I did pull both my Achilles tendons.

• CF Diagnosis also includes assessing your ‘mental health’ before you became fatigued. So generally a CF person is doing a lot of things and usually placing other peoples interest before his/herself: in my case I was writing and doing creative computing while trying to facilitate love ones careers ( I would travel half the country after work to witness their milestones: give them money for rent or a holiday and I just worked harder to recoup what I gladly gave).

• CF Diagnosis it is usual that some change occurs or let’s say you must do something different that usually gives extra stress: it could be an extra role in your job, you are getting married, you are moving house- in my case I had a virus that meant that I was unable to write my first FLASH (a computer language) program or even get anywhere close to finishing my first Second Life Project (a computer virtual reality environment on the web) (indeed I have not been able to bear to revisit this – it’s too painful and stressful)

• There are three general degrees fatigue and I can say I have experienced the most severe and I am living in the middle one. But the least severe would enable the sufferer to lead a ‘normal’.

• How bad can CF get/be? AS I explained to my GP and anyone who can be bothered to listen it can be fatal. I know what is like to go to sleep one day feeling tired and then lost any notion of who or what I am, where I was, the basics of being alive for days. My partner had to force feed me in bed and drag me to and from the toilet from our bed. I did not even have the energy to open my eyes. All I can remember of the episode is that in the darkness I recognised my partner’s voice as someone I must know and that I keep saying leave me alone (I think). Otherwise if I had lived myself I would have died in bed.

• I would love to say things got much better once I began conscious of myself and even began moving again. Sorry for me what followed was that I would get a shooting pain in my head that went straight through my body that would cause me to collapse without warning. I made the mistake that mind over matter could control it by venturing outside along the canal to only collapse by the side of the canal with by arm in the water. Even now, I can never be sure if this will happen to me again.

• As I told and keep telling my GP no matter what any doctors say the day I either collapse again or lost days again as I have previous mentioned the first day I can commit suicide I will commit suicide.

• Luckily, presently I am more likely to get headaches and feel dizzy when life drains me too much. I do not just mean physically. I mean mentally and socially as well. I cannot argue without it having a detrimental effect on my energy levels which my GP constantly seems to ignore. Frankly, I cannot truly be there for someone else (sharing their burden) without it reducing my energy levels too. To be honest most of my relationships were based on the latter.

• HOW CAN YOU MANAGE IT?- you’ve gotta change your life. Change your mindset. You gotta expect that you are no longer ‘superhuman’. There will not be enough hours in the day like most people. You are not going to be able to shoulder the load of others and take up the baton of others when they are flagging like you used to. This may sound like nothing to those who are in no damage of being fatigued but life, my relationships, indeed everything for me was centred around the notion of my ‘superhumanness’. For example I now have to prioritise things, events and people. I must overcome the sense of guilt (scratch that, I should strive to get to a place where I feel no guilt at all). The hardest thing for me is to say “No” to anything since I never had to before. The second hardest thing for me is for me not to offer any assistance to anyone I could see who may need it. I just do not mean people I know but also strangers like overhearing someone asking directions to Leeds station and yet not doing anything about it because I did not have the energy to even chase after him or shout at him and what if he could not understand what I was saying due to the fact that English was not his first language, I would be honour bound to take him but that would be doubling back on myself and if I could keep pace to his walking stride since he was in a hurry?

• HOW CAN YOU MANAGE IT? Change the nature of all your relationships. Even like me when you are upfront and explain how the relationship must change, people will forget, there is be times when people think that you are cured when they know better.

• HOW CAN YOU MANAGE IT?- Change how you go about doing what you want to do. Yes, the more physically, mental and socially you can do day in day out the better. But I would suggest this will not be possible until you incorporate rest (of the body) and relaxation (of the mind). Think of both as ways of refuelling you energy reserve.

To summarise, the effects and scars of CF will change your life forever. Think of the condition as having a too small reserve of energy because you body is in constant fight and fight mode so it is near impossible for sleep (no matter how many times you do sleep in a day) for the reserve to increase living the same as you did. The idea is all about saving energy up for the next day so you may eventually increase your energy reserve. Rest and relaxation aids this and help to counteract your fight and flight mode that will urge to deplete you energy as soon as you have some. If you can avoid this then you are well on you way to managing with CF. Things like finding out what drains you and what energises you can also help if you try to maximise what energises you in your life: for example ‘making love’ or ‘doing the washing up daily’ may either drain you or replenish your energy, it’s all dependent on the individual. When you do try to do more it would be ‘graded’: say whether it is being able to walk or talk or read for ten minutes daily without a break, you shouldn’t then jump to trying to do the activity for 15mins or 20mins that is a FIFY and a 100 increase respectively. Indeed, having a varied (physical, mental and social) timetable of activity can help to replenish your energy levels.

If you are in the Leeds catchment area get your GP to refer you to Leeds CF clinic in Seacroft Hospital – I think they are true lifesavers.

2. Poor Practice from my GP practice

• It lied that there was nothing more that the NHS could do about my fatigue

• It did not mention in my record that I complained about having Fatigue each time I had a consultation

• It repeatedly said that my skin condition flare ups, stomach cramps (1-3 days of being bedridden) and going to toilet problems (occurring in the order I stated) were not only unconnected but in no way have anything to do with be being fatigued (has turned out to be prove incorrect) though the symptoms only occurred) since I had been fatigue

• It never corrected me once when each time I mentioned that I had CF

• It misquotes me in my record: for example I said that “I think if I could get eight hours sleep then everything might become alright (fatigue wise)” rather than “I can not sleep but everything is alright”

• Though I told 7 people at my practice that I was dyslexic and brought in my Dyslexia Report to 4 consultations for it to be read once the last GP I saw to date still needed to be told that I was dyslexic Only advice offered was to do as much as physically possible (as I did and it near killed me – ‘graded’ exercise is key above)

• Last year, a GP told me that I should accept that my life will be bedridden and I shouldn’t fear repeated the last four years of my fatigue because I survive it then so I can survive it now (at stated about this will never happen and goes against their three principles and our verbal agreement)

Please note that the above cannot be proven for or against because its my word against the practice’s word or incorrect record keeping.

• It failed to pick up on my previous surgery’s probable CF diagnosis

• It failed to pick up on me being prescribed half beta-blockers from my previous surgery because I was dyslexic

• To date the manager has refused to implement any of the suggestions I have proposed to ensure that I would not have a leg to stand in the future if I complained about the same thing again

• To date the manager has failed to implement any change itself to make sure I could not complain about the same thing again without it proving that there was something mentally wrong with me.

• To date my doctor has refused to ensure that the practice is there to serve its patients rather than vice versa.

3. Poor Practice from PALS

Whether I wrote to them or talked to them on the phone they were of no practical use to me. I feel cheated that I wasted my depleted energy in correspondence with it because

• They told me to talk to my practice again and again, though I explained I was getting no where and this was draining my energy and that the practice should know this so I did not understand why it was acting as it is unless maybe there is some racial, personal or anti disability motive

• It told me incorrect info (I think but it is not clear): it said that there was a way for me to regard my health record on the computer screen for free if I had attended the surgery in the last so many days (sorry for vagueness but I was told on the phone) but the practice implied in public that I was trying to pull a fast one but will do me a favour this time. (in their defence, the GP actually printed out some sheets of my record but not at my request and if he had said before he printed that there would have been a charge then I would declined the printout. Though this was a rare moment of rationality from the practice, I was not going to trust what they would have done with the printout)

4. Poor Practice from the Complaints team and senior staff

• Did not seek clarification from me about the nature of my complaint

• Did not adhere to its own deadline regulations for the verdict

• Did not bother to keep me inform of any delay

• The response did not mention anything about the about delay

• I had to chase up the response with the team via three emails over three weeks (granted their email server did not ‘recognise’ the email address so I had both find out what the problem was and then solve it (by using a different email address)

• Knowing that I had emailed supporting evidence, the Chief Executive still signed off on a response that did not address anything from my supporting evidence

• Surely after waiting over a year for a verdict about a way forward that ensures the poor practice of my practice will no longer have a detrimental effect on my health and lifestyle, there should have been recommendations about this!

• Surely the response should have mentioned what lessons should be learnt from my complaint

• Surely from the team’s investigation should have realised that I had seen my record so just regurgitating what it says in the response would never even appease me let alone satisfy me.

• How can the chief executive imply that how I have been treated was exemplary by the practice, PALS and his team? Surely if that was the case he should have suggested I needed mental help due to the fact that no sane person would or should complain about what I am complaining about.

• Why does not the response explicitly state what the ramifications are, if any, of the verdict to the practice

• The most antagonising thing about the response is that it does not mention if there was evidence to uphold my complaint whether it had been worth complaining about and how severe would the complaint be

• Another antagonising thing about the response is that it makes no acknowledgement of how distressing and how much effort (draining energy effort) it much be for me to have brought the complaint (any layperson would be forgiven to think that my long-term conditions is like chronic back or shoulder pain)

• But what is most disgusting about the response is that it fails to state that any NHS service is there to serve the patient well and for any NHS service complaint some failing of this must have occurred even if the service should have explained thing better/differently or that the service should have realised that the patient has mental issues or something else.

5. What I want to happen next

The below is the minimum I expect

• I letter from the chief executive explaining why his response was delayed and apologising for it. I also want the letter to detail the timescale of when I should expect their second attempt of a response (taking for granted that he and his team will try it again)

• I want a letter from the practice detailing what drug treatment I can have for CF (I repeatedly ask for this)

• I want clarification on whether or not a patient can see their health record on a screen for free or not

• If I cannot either record my consultations, get a GP to sign a letter of what we both agreed occurred in the consultation in or after the consultation how can I ensure that my record is correct? Because even if I saw a GP put the note in my record how do I know the GP cannot change it later and I end up in the same boat once again in the future? So I want written confirmation that I can record my consultations because me saying note everything I say does not mean that the problems I have highlighted can easily discovered later.

• I want a letter from my GP and practice manager that apologises that they did do more to prevent the possibility that I could complain about the same things again in the future and also acknowledges (and expresses regret) that this whole process must have been distressing for me and very energy sapping too, thus detrimental to my health.

6. Ramifications of my story to NHS in General (my thoughts)

• There is a lack of general knowledge in society that GPs are not honour bound to note every symptom a patient says s/he has.

• There is a lack of knowledge of CF and even dyslexia and dare I say blackness: I keep on repeating the same thing and I am ignored each time) in the NHS

• The complaint process is not there as a tool to facilitate better patient care or to promote exemplary care but just there to state what can be proven

• If a GP surgery practiced any ‘ism’ (I’m not implying that my practice does) it would be easy for such practices to flourish

• Surely, every NHS service should advertise this site (it should be common knowledge)

• Evidently, the NHS is not patient focused any more and it no longer matter what a patient wants, thinks and/or feels

• More organisations like my practice will force a state where the NHS will be paid for at the point of use (to me the benefit of this is that NHS and its patient would enter a legal biding contract where a patient would need to die to sue [ironic] but sue that an organisation who neglected to mention or try something that it did with another patient because there was an agreement that it is being employed to get the patient work ready again as soon as possible and not delaying recovering for five years (and hopefully not six years) like in my case.

Sorry for the length.

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