Dying, it really can be frustrating...

So, you all see the photos of me that I post from time to time and let's be honest, even almost a year after being initially confirmed as a person who has cancer I still look pretty good if still somewhat rotund ....

If the doctors are to be believed I now only have 7 months left of the year they estimated that I have left to live, but again being honest I really don't even think about it except along the lines of, yeah, right.  No, I think I will last the seven months and like the Duracell bunny I'll just keep going on and on and on until one day suddenly the cancer will probably sit up and say, ' hey, this tit is giving me a run for my money so I think I'll up my game a bit and make him suffer!'

Well if that's the case then so be it, but until that date it can go and get stuffed and I will continue to grab onto life and enjoy it with Ishbel, the kids and the Grandkids  and with all you wonderful folk popping in from time to time to keep me company.

Since the day the surgeon suggested it wouldn't be a good idea to operate I have been resigned to the fact that my death is going to come a lot earlier than expected and there is no doubt that I did feel more than a tad down about that especially as the Grandkids, apart from one are at ages where it will hurt them the most, with the youngest Lacey Mae still too young to comprehend what would be happening and even when she missed me she would still be so young that she would soon get over it and forget me apart from the silly stories her mum, and sisters would relate to her to try and remind her of me.

Death is not something, we as a family dwell on too much apart from me using it as a means to an end ... 'what, you're kidding, I can't do that or go there, I'm dying, give me a break...', usually to be told to piss off by Jennifer with the added rejoinder, you're taking your time then......

And then I get the call from the GP 'a surgery from a new nurse inviting me in for my annual asthma check up. On learning that she is new I ask if she has checked my records, no, not really, she replies. Oh, right, says I, so you don't know I have terminal cancer and there is not much point in me coming in, is there.

To be honest and thinking about it later I felt like a complete shit putting her on the spot like that but again I have never really been a fan of that annual check up. My first question to the old nurse ( who wasn't old really) was usually, have you found a cure yet for asthma. No, she'd reply. Then why am I here then, I've got better things to do with my life than take time out to come here ONCE A YEAR ...... yeah I know what an arse hole,  I know, I know......

And then I have to attend the hospital every two months at the moment and these oncologists are busy folk, there seems to be a lot of cancer patients to see and I imagine that it wears them down.  But with the cancer, apart from attending Broomfields hospital, there was just something about that place that really got to me and my irritation did show through, but generally I have accepted my fate and just get on with it. I attend hospital, I sit there and feel sorry for some of the others who look close to deaths door and clearly with much further advanced cancer than me and I feel sorry for them BUT glad that it isn't me ...

Not once have we attended the hospital and been seen by the oncologist or registrar anywhere near to the time of our appointment.  Today was typical of that.  Our appointment was for 4.15 and as usual I turn up a good 50 minutes early, a) to get a parking space and b) in the hope that I might get in early! Not much chance of that, but I keep trying anyway. We were finally called to see the registrar at 5PM, 45 minutes after the scheduled time.

It's one of those things and as I said earlier, there seems to be an awful lot of folk with cancer to be seen and I've noticed that depending on how poorly or well the person looks like going in, depends on the time spent with the doctor.  I also imagine as well that where a person is having difficulty in dealing with their situation and maybe tearful , etc, I can't imagine the doctors rushing through the consultation and throwing them out of the consulting room. It's just the way it is.

So then there was this one guy there today.  He looked a good bit younger than me, which also may have accounted somewhat for his attitude, but he also looked about as bad as me and you know what I'm saying here... Not that bad, considering the diagnosis .... So, he had been in there when we arrived. I noticed him as there were plenty of chairs in the waiting room, which was it's usual busy self, but he was perched leaning against the window ledge, staring at the corridor and the consulting room doors.  Eventually one of the nurses spoke to him and the next thing we hear is him ranting at the nurse. 'I've been here for ages, all these others are coming in after me and they're being bloody taken in to see the doctor in front of me. I've only been given 6 months to bloody live and I've got better things to do with my bloody time than to stand here and be ignored ....'

And with that he turned and stormed out the door.

Now, I can and do understand his frustration. You can see from my own experiences above, that I too, along with every other cancer patient attending the clinic, have to sit for long periods and the first thing you do on turning up, you look at the board.  Today it said, 'waiting time for Dr Chan, 30 minutes' but mine was 45 minutes.  Is there not enough oncologists and registrars, clearly not.  Is that the fault of the doctors, probably not? Is it the fault of the nurses, most definitely not?

Obviously I don't know this chaps particular circumstances. And my attitude, again as you know, having been shot, stabbed, crippled, nearly drowned (3 times) and all that as an adult and then of course there was all the near misses I had as a kid, I really was reckless and nearly died on a couple of occasions between the ages of 6 and 12 as I didn't recognise the danger of situations I put myself into, I accepted, quite calmly the news that my days were finally numbered.  Having accepted it, I now just get on with living my life enjoying almost every minute of it and dragging myself out of bed to go to work every day, even when I really don't feel like it.

Will this state of mind continue as my condition begins to deteriorate, I would like to think so, but who can tell.  I just hope this chap comes to terms with his situation, for his sake and those close to him.  All the doctors and nurses who look after me, and him, at Basildon hospital really are there to help and assist and make life as comfortable for us as they are able to and through no fault of theirs, we, the cancer patients, will always outnumber the number of people who are giving every day of their lives to look after us to the best of their ability, training and calling.  They are not there, when we turn up, huddled behind a closed door, drawing our names from a hat, to see who is going to get seen. Some patients condition are much more progressed than others and some have conditions that are much more complicated.

Some of us, need to have the information given to us by the doctor repeated ad infinitum, and in simple terms that we can understand.  This isn't a visit to the GP that you know will only last 5 or 10 minutes and the sooner that poor chap comes to realise that, hopefully for him, he can get on with living his life and maybe, just maybe getting rid of his anger may slow the progress of his deterioration.

BTW: I didn't get to see pretty wee Olivia Chan my oncologist and ended up with tall handsome Ewan, her new registrar, which pleased Ishbel no end as apparently he was delicious ...... Sheesh and all I got was an increase in meds.  ah well, maybe  I'll get wee Olly next time .....

A Question For Scots

The debate over Scottish Independence from the rest of the Union is turning into a bit of a political hot potato since the British Prime Minister opened it up fully on the Andrew Mar Show on Sunday last.

Now my feelings have already been made known on this subject through my previous post last October in Scottish Independence  when I nailed my colours to the mast in favour of maintaining the three hundred year old Union.

Everyone is laying into the debate and apparently the British Parliament through the current government are letting it be known that if Alex Salmond, the Scottish First Minister and the SNP, the ruling party in the devolved Scottish Parliament, ignores the law and tries to hold a referendum without the consent and agreement of the UK Parliament, they, the UK Parliament will go to court over the matter.

Something happened today to make me think about this again, something close to home that is.  You may recall that I have mentioned that Ishbel suffers from something called Laryngeal Dystonia This is a condition that affects the vocal chords of sufferers and makes it difficult for them to speak.  There is no cure but it can be moderated through continued visits to the hospital for specialist treatment every three or four months, resulting in a painful injection into the vocal chords.

Now a few years ago Ishbel told me that she met people when attending the clinic in London who were also waiting for their injections, and she told me that they came from all over the country as there is only one consultant in the country who specialises in this.  Well, today she came home from her treatment and told me that she met a very nice man who had come all the way from Scotland, with the NHS picking up his travel costs and hotel for an overnight stay......

Now there are a couple of points that this raises, one being why the hell is there only one clinic seemingly in the whole of the UNITED KINGDOM, that offers this treatment or which has the expertise for it, I am sure that there are probably reasonable answers to that question? But, the far more important question for Scots, is this.

If the SNP get their way and become the architects of the breakup of the Union, what happens to all the UK wide services that are currently offered, even under Devolved countries, such as sharing NHS facilities.  yes, I know that NHS services are currently different in the UK with free prescriptions, and care homes for the elderly in some parts, but not in others.  But, Scotland and Wales and Northern Ireland are funded by the UK exchequer from revenue raised, mainly through taxation.  Now taxation as we all know takes many forms from income tax to corporation tax to VAT, to fuel tax and energy surcharges and so on and on and on.

But I keep coming back to that same point, will there be enough people and jobs for an estranged Scotland to raise the taxes for the country to be self sufficient?  And, will people in Scotland, and eventually Wales and Northern Ireland, if they see Scotland achieving Independence, will they go the same way, and will those who suffer from these obscure illnesses suffer, because the English NHS will not fund treatment for them and will the NHS of those countries be able to provide the treatment that they need to maintain  a decent and comfortable lifestyle that is provided through the treatment they receive at the moment?

BBC News article

NHS an update - still no word from my MP

As you know I wrote to my MP last week asking her some questions about the booking system for NHS appointments.  I was going to say that I have not received a reply, but that is not strictly correct:

There was an auto reply to the email, which read as follows;

 HOUSE OF COMMONS
LONDON SW1A 0AA

Jackie Doyle-Price MP
Member of Parliament for Thurrock

Westminster Tel. 020 7219 7171
Constituency Tel. 01375 802029


Thank you for your email, which will be dealt with as soon as possible.

If you are a constituent living in Thurrock, please ensure that you have provided your full name and address. No emails will be answered unless a full address is provided. A telephone number would be appreciated but is not absolutely necessary.

Please note that there is a strict Parliamentary convention that MPs can only deal with matters raised by people from their own constituency.

I receive a large number of emails, letters and phone calls each day and I will try to reply as soon as possible. However, please note that all communications, including emails, are dealt with in the order they are received.

Thank you for taking the time to contact me.

Jackie Doyle-Price

To be honest this is probably more than I actually hoped for and as it has only been one week I am probably being an impatient patient.  So I will curb my usual frustrations and see if a more formal reply actually turns up.

In the meantime and in regard to hospital appointments I can report the following;

My ire was irked at the fact that my Doctor referred me to some outfit called Fortis who would then make the hospital appointment for me at the audiology department to have my hearing tested.  

Fortis eventually sent me a letter only after I called them. But during the course of that call I discovered that they were making an appointment for me in a hospital that, if you do not have your own transport, is difficult to get to from where I live.  So during the course of the call they agreed to make me another appointment at a hospital that is only a hop skip and a jump from my front door!

They then sent me two letters, the one for the original booking and one for the new booking!  Banks charge anything from £12.00 to £25.00 to send you a letter so how much does Fortis charge the NHS for sending them?  I also note from the leaflet that I was given that Fortis appears to be owned by a group of local like minded GP's.  So that means that they are getting their £1000k plus fee from the NHS for providing  the basic GP service but now they are also charging the NHS to send out letters to patients for appointments.  Well on the face of it ok but then you discover that you still have to receive a letter from the NHS appointment centre and the specialists clinic, confirming the appointment, so the whole system is being duplicated.  Now I ask you,  "Is It Me"?  "Am I being a particular dumbfuck here or is it them"? 

The Labour government took us into bankruptcy both Economically and Morally leaving a note for the ConDems as they exited stage left informing them there was no money left.

The Condems took this note literally and started slashing all internal UK departments spending while maintaining the Department for Overseas Developments budget for Aid and Assistance elsewhere, including £295 million per year to India.  India is, if you aren't already aware, a Nuclear Power and has a Space Programme. For shits sake even America is now saying that it [sadly] can't afford to maintain it's own space programme, yet we give India £295 million pounds a year!

I'm losing the plot here..... NHS appointment systems, well update.  Last week Ishbel got a phone call at home from Orsett Hospital to say that the audiology department might be able to give me an earlier appointment if I phoned them, that was on Thursday, so three letters and a phone call.  Anyway I forgot to do this on Friday and now I wish I had forgotten yesterday, because I made that call............. and this is how it went.

10. 50 AM called the number got an automated system which I later discovered is named, "The Oracle" Now I am seriously looking over my shoulder to see if Mr Smith from the Matrix is about to take over my body and by the end of the 'call' I was wishing he had.

Do you remember that scene in The Matrix with Neo and The Oracle in the kiddies play area and she says to him, "The bad news is there is now know way that you can know whether I am here to help you or not"?  well, I have got news for you if you are in the UK and have to phone an NHS number that employs this system;

SHE ISN'T FECKING THERE TO HELP YOU AT ALL

No, she is there to make your life miserable and frustrated, she is there to deflect you from the people who are still probably sitting there drinking coffee and saying to each other over their digestive biscuits,,

"I wonder how many sad frustrated dickhead patients we have managed to feck up today, when they thought they would get one of us and we gave them this system, anyone for another coffee or herbal tea"

Oracle says, " You have reached Basildon NHS trust (or words to that effect) please speak the name of the department you require or dial the extension number now". 

Now I am a sad bastard when I get a hospital appointment letter, I scan it in to my computer, wasting space I know, and stuff the original in my 'manbag' that I carry around with me - Ishbel doesn't like this but that's another story for later- 

So, I already have the letter on screen and I am busy looking for the extension number  THERE ISN'T ONE (check all the other letters I have later NONE OF THEM HAVE AN EXTENSION NUMBER - SO WHY ASK THE FECKING QUESTION!!!!!!!!!!!!

Me, I ask for,  "ENT"

Oracle, "I am putting you through to A and E unless you say cancel, you may also ask for the operator"

Me, "Cancel", then ask for "Ear Nose and Throat"

Oracle, "I am putting you through to elderly services department unless you say cancel, you may also ask for the operator " 

Me, trying to be clever as I become more and more senile and elderly by the fecking minute, "Cancel" then I ask for "Orsett Hospital Ear Nose and Throat Department"

Oracle, " I am putting you through to Orsett ward now unless you say cancel, you mat also ask for the operator"

The phone starts ringing and by this time it is 10.54 AM and the phone rings and rings and rings and rings and rings for two minutes and eventually is answered.

Female voice, "Hello, ENT emergency how can I help""

Me, "Uh, Oh, did you say ENT emergency"?

Female voice, " Yes, how can I help"?

Me, " Well I don't know if you can I phoned Basildon to get through to ENT Appointments, but your......"

Female voice, "Oh, you got the machine then...."

Me, "Yes, I have an appointment for ........

Female voice, "We don't do appointments, do you have wax in your ear"

I though she was being rude now, but I will give her the benefit of the doubt after all I am maybe going deaf (and clearly Fecking insane)

Me, "No, it was about an appointment and I asked for ENT appointments but it clearly is not impressed with my Scottish accent"

Female voice, "Well sorry, can't help you you will need to ring them"

Me, pleading in a whinny voice, "Oh can't you help me, can't you transfer me to the appointments department, please"

Female Voice then asks me who my appointment is with, I tell her and she informs me that she can put me through to Debbie the Consultants secretary, which she promptly does....

Long story short I  got through to Debbie and explained my tale of woe to her and asked if she could check and give me the earlier appointment that the phone call on Thursday offered!

She explained that she could not do that but she could transfer me to the "NEW APPOINTMENTS" centre.  I enquired if that was a "New" NHS appointment centre or a Fortis Appointment Centre and she said, "NHS"

So, anyway she tried to transfer me but the phone kept ringing, bless her she stayed on the line and then gave me THE EXTENSION NUMBER saying that it would probably be better if I phoned in the afternoon as they were normally quieter then! (That's probably because all we FECKING ELDERLY FOLKS are having our afternoon naps.

I thnaked Debbie for her help and hung up and do you know what I have not called the number, it was by then 11.14 AM. 

TWENTY FOUR MINUTES IS CLEARLY NOT A LONG TIME IN ANYONE'S LIFE, UNLESS OF COURSE YOU ARE STRAPPED TO A TABLE AND SOMEONE IS PULLING YOUR FINGER AND TOE NAILS OF WITH A PAIR OF PLIERS OR SINGEING YOUR BOLLOCKS WITH A HOT POKER AS THEY PREPARE TO SHOVE IT UP YOUR ARSE....

And that is what that 24 minutes felt like.  

Burt one thing I will mention and point out here, did you see that part of the conversation with Debbie from the NHS, here it is again;

She explained that she could not do that but she could transfer me to the "NEW APPOINTMENTS" centre.  I enquired if that was a "New" NHS appointment centre or a Fortis Appointment Centre and she said, "NHS"

So my original question to my MP stands, "Why are the NHS in this part of Essex paying a third party through the GP system, owned and operated by the GP's to organise NHS appointments while we still have a "NEW" appointments centre in the local NHS"?

We could get rid of one of them and give the money saved to bloody INDIA!!!!!!

My Letter to Jackie Doyle-Price MP on third party booking systems for the NHS

Dear Ms Doyle-Price,

I recently visited my doctor in South Ockendon with a hearing problem.  After examining me she informed me that I would need to be referred to ENT for further tests and mentioned hearing aids!

I was then sent in to see the nurse who was to take a swab of my ear for tests and told that the results would be ready in a few days.  After waiting a few days I popped back in to the surgery to be told that there were no indications of infection, good news, so I asked when I might hear about my appointment for ENT.

The receptionist gave me a leaflet explaining that I had been referred to Fortis Healthcare, had never heard of the them and that they should be calling me by Wednesday 17th August, the day of my visit  to check the swab results was Monday 15th August.

I waited but no call was received, so I decided to give it a day or two.  Not having heard anything by Friday I decided to leave it until Monday 22nd August when I decided to call Fortis direct. When I did eventually get through, the phone was going unanswered for an interminable length of time, I gave my details and was informed that a letter had been sent out to me that day and that an appointment had been made for me in October at Brentwood!

Before I get to that I made some general enquiries of the young lady I spoke to on:

a) Why they had not contacted me by phone as detailed in their leaflet - Could not say as she did not know why 

b) Why was their phone not being answered promptly - Understaffed and have been since they were set up and they have loads of backlogs of patients waiting for appointments and have had since, again, they were set up

c) Why would you make someone living in Ockendon and appointment for Brentwood when Orsett and Basildon were easier to get to - It was the earliest appointment.

I have a number of concerns and issues with this.

1. Why is this service of appointments to hospital being outsourced to a private company?

I don't know if you have visited a hospital recently for any of the many clinics that they have.  I have/do. Ophthalmology and Arthritis.  Whenever I visit either department they have teams of receptionists and staff sitting in front of computers.  On arrival you hand them your documents you are booked in.  At the end of the session you hand them your notes and a further appointment is made, normally.  However I note on my last visit to Orsett Opthalmology that a new appointment was not made and I was told that this will be sent out to me in the post and I wonder now if this is because it is going to be done through this new system?

2. On reading the leaflet it clearly states that the GP will write to Fortis and that that will be sent electronically and that they Fortis will then contact the patient within 7 working days, by telephone, if they have been given the correct information by the GP.  I can only assume that they were given it as I have ensured that my GP's receptionist has my full contact details.

But it seems from the above that they did not even bother to do this, because they are short handed, apparently.  

3.  When I did call them on the 22nd they informed me that they had sent a letter that day with the details but if Brentwood was not suitable they could change it there and then and send me a new letter, this was done and an appointment was made for the next day in October from the Brentwood appointment, but in Orsett.  The letter mentioned in that call did not actually arrive at my home until the Wednesday and was postmarked 23rd, I called 22nd.

4.  I then received two more letters on Friday last, 26th August, one from Fortis dated 22nd August confirming my call and change to Orsett and one from Basildon and Thurrock University Hospitals also dated 22nd confirming a 'provisional' booking for the October appointment!

I am assuming that like a bank or credit company, Fortis levies a charge against the local NHS for every letter that is sent out. So why did the letter dated the 22nd still go out when it was postmarked 23rd, and after my phone call?

Why if all of the hospitals still have all of their administration staff in place, do we need to go through a third party and pay an additional cost to them for a service that clearly was/is not geared up to make any improvements to the service already offered?

How much is Fortis charging for this service and are additional cuts going to be made to NHS staff to fund it?  

If the NHS staff are to be made redundant, how much saving is that going to give the local NHS trust, after redundancy payments are met and how many staff are likely to be made redundant?  

If staff are likely to be made redundant because of this privatisation of bookings, what impact is that going to have on the local economy in the long term?

If staff are not to be made redundant from the NHS, why are Fortis being paid to do this?

I await your early response 

Yours sincerely

Tom Stronach