Sheffield Spinal Unit

Constant Check-Up Cancellations

I know some of you seem to get good treatment at Sheffield, including Simon but my recent experiences aren’t good.

After many cancellations for my annual check up I made sure I went, even though it was a day after my wife’s death, which was July 2007; that’s 2 years ago. When I told them my wife had just died they told me I shouldn’t have come, but I told them my check up had been cancelled by them so many times I wanted to come due to some health problems; mainly excruciating nerve pain.

This health issue was addressed and I was prescribed Gabapentin, which has stopped the nerve pain. Three months later I had a follow up appointment back at the Unit, which was November 2007 and during this appointment the death of my wife was discussed as the Consultant was concerned, but since then every appointment has been repeatedly cancelled and put back months.

I was then given an appointment for February 2009, which was latter put back to Monday 15th June, a four-month postponement. Two days before I was due to go, the Spinal Unit phoned, and once again cancelled my appointment, despite me informing them I had serious health issues I needed to discuss with a Consultant.

There response was, “I could have a telephone consultation with a nurse”. I informed them I really needed to see a Consultant, but they told me that would take months due to them having too many patients and not enough Consultants.

A few days later I received an Out Patients appointment to see Mr McClelland at 2.40 on Tuesday 23rd June, which was yesterday. I knew Out Patients is usually on Monday but assumed they were trying to catch up on their backlog.

After a 60-mile drive there I discovered the letter was sent by mistake, which upset me greatly. However, a nurse saw me and wrote down my serious health issues but obviously couldn’t help due to their complexity. When she looked at my notes and noticed how long it had been since I’d last been to the Unit she appeared to blame me, but I told her, my appointments had been repeatedly cancelled by the Spinal Unit not by me. I also told her my letters requesting an urgent consultation with a Consultant had been ignored.

The Units latest practice is to do telephone consultations by a nurse to establish if you need to see a Consultant, you will then get an appointment but it will be months later. This practice would have been ideal a few years ago when I was young and fit, as I hated the journey to Lodge More just to tell them I was fine.

For me, yesterdays 120 mile round trip was a complete waste of time; in fact it added to my health problems. Some people seem to get good service at Sheffield, and when I was young and fit I could go any time, but now I’m older and need their support I feel they’re not there for me.

I don’t really write about my problems in an open Post, I always try to write in a light hearted way, to make members smile. I try to write positively in the hope it encourages others who are having difficulties, but I’m really sat here feeling completely isolated.

Since my wife died I’ve suffered horrific nightmares, which involve my wife. I’m not a violent person in fact I avoid confrontation but my nightmares are very violent, with me clubbing my wife to death with a huge piece of wood. Although these don’t happen every night my nightmares are horrific as they’re so realistic and repetitive, full of blood and gore as I smash my wife’s head in with great violence. I’ve tried seeking help from my GP and now from the Spinal Unit at Sheffield but my cries for help go unheard.

Everything is building up more and more, my funding for my Care Package was reviewed and I now find I’m Contributing 3 times as much, which I cant afford. My PA’s are changing, so another stressful time getting to know new PA’s. Although I request support from Social Services, no one visits so the problems and stress get worse as I have to deal with everyone on my own..

When one gets older its more difficult to deal with stress so I try to seek help from the professionals, but get nowhere. I feel rejected, disillusioned, unhappy and totally isolated. I dread going to bed due to the nature of my nightmares, which are either a part of the bereavement process or some underlying psychological problem. Speaking to a nurse over the phone certainly isn’t the answer; she isn’t qualified to deal with this, so it looks like I’ll be waiting another 6 months to see a Consultant, but I don’t think I can last that long.

I’m not writing this for you to reply with words of sympathy, I just wanted to highlight the lack of support I’m receiving and the constant postponement of appointments in my battle to speak to a professional at my Spinal Unit.

Scrib’s.

This is so sad. You should not have to go through this at all. I am not familiar with Sheffield as I live in the US but it is so wrong.
I am not a professional but it sounds to me like your nightmares about your wife show your anger at her dying and leaving you. The violence says you are very angry and it is understandable. Like you said, as we get older things change and this is a time when you need her with you. Add the stress of your appointments being cancelled all the time, it is no wonder you are having difficulty. The inconsideration they show not only in cancelling your visits but to make you travel that distance for no reason is inexcusable. I know you said you don't want words of sympathy but your health care providers are letting you down when you need them. We don't have that problem over here, so far anyway, and we have choices of several places to go. Obviously, you don't and that is what makes it so sad. I really can't help but I am sorry you have to go through this.

DavesMom, Diane

Scribs; you have got to complain, initially, to the Sheffield PALS people; your text says it all, but you could underline the complaint by seeking a copy of your hospital records for the period in question.

I have no explanation for this sorry story but i will say that my wife recently got a result recently over postponed hip surgery by approaching the local PALS.

If you don't make progress tell them you'll be writing to the press and your MP.

Hi Mike,

Sorry to hear you're getting messed around by the spinal unit.

Here is the web address for PALS in Sheffield: http://www.sheffield.nhs.uk/pals/

It might be worth contacting the Spinal Injuries Association as well, to see if they can give you any advice: http://www.spinal.co.uk/B-02.aspx

Regards

Simon

hello there

I've had quite a few appointments cancelled by sheffield
hav to say does get on your wick

still prefered when it was lodgemoor as u were a person there and not just a number
think since thomas left and then ravi its going down hill fast

I don't know wat u can do to make it easier
oh n like u had a appointment for monday earlier this year and got a letter friday before to say it was cancelled
all gud fun (not)

hope things get better for u

Mark

Jeezuz H. Scribulator, the very idea of having to wait months to see a doctor about what could be an urgent medical problem is insane.
What the hell do people do when they have a true emergency?

My god, the neighbor's parakeet just bit my arm off!
Sorry sir, you'll have to write a letter to your health practitioner.
But he bit me writing arm off.
I'm sorry for the inconvenience sir, I'll be happy to direct you to the don't give a shit department.
I feel faint, losing blood fast.
Find a bucket sir, we may need the blood for someone more important than you. Soon as yer dead someone will come around to pick it up.
But, but......
Hurry up and die sir, I have another call waiting. They may have more money than you sir. And don't let anything happen to that bird sir, he'll make a great telefone receptionist.

E

It's an appalling state of affairs. This is a dedicated spinal injury unit, so it doesn't seem like too much to ask that they would realize the difficult situation their patients are in, and how they need at least the certainty of being able to make an appointment without it being cancelled.

I'd like to know how they decide whose appointments to cancel and whose to keep.

Is the Unit underfunded? Is that why they can't hire more consultants, or pay them for longer hours? Is the new system of phone interviews something a new administrator put in place, trying to make a mark?

I agree with the above suggestions of contacting the PALS, and if that doesn't bring any results, contact your MP. I would go so far as to suggest petitioning for a better budget allowance for the Unit. Also (and I know this idea probably won't appeal to you, because you are quite a private person, but I really do think it is worth considering) perhaps you could consider contacting the media for them to do a story on the difficulties patients are having with getting appointments.

I also wonder if anyone else has made complaints about the Sheffield Spinal Unit elsewhere on the internet, if there was someone you could get in touch with to get together and present your cases together. I did a search for other complaints, but I didn't find any yet.

***

I'm glad you did decide to post from yourself, from the heart. I know you like to post from a positive place, with a smile and a helpful word, but you are part of this community, and just as entitled to its support. Venting is a good thing, sharing the tough stories is a necessary thing.

You're a good man, Scribbler, and you've been a good friend to many who've needed one on this forum. Let people listen to you for a change.

Hi Mark,

Your Monday appointment was cancelled due to Simon going there for his Scan results; he pinched your place... I'm just kidding Simon so don't ban me...

E-Dog,

I couldn't stop laughing when I read you post... You always come up with some cute remarks but this one tops the lot.... Thanks.. I hope the bird is alive and well?..

I've just had an email from Sheffield to infiorm me I have an appointment in September to see Mr McClelland.

I particularly wanted to see him as his wife and mine were both battling cancer at the same time. We often had private chats together about things, so we have a good relationship and can speak openly. Unfortunately his wife died just before mine, so I know he must have an insight into my problems and will listen sympathetically.

I know why I have these horrific dreams, which started after my PA (Little Anna) left to get married. We had a great working relationship so it was sad when she left. She was the first PA to leave after my wife died.

Although over the years I'd had other good PA's leave, I'd always had my wife here; my rock, my best friend and my lifeline. When 'Little Anna' left, my wife wasn't here for me so the nightmares started and gradually got worse. I psychoanylised myself and came to the conclusion that from now on, anyone who came into my life would always leave me and from now on I'd always be alone.

I think this made me subconsciously blame my late wife for leaving me, which manifested itself in these nightmares of horrific and brutal acts of violence towards my wife.

I told all this to my GP who agreed with me, and the nightmares stopped. I thought I was ok until they came back again; usually when I'm under any stressful situation.

My nightmares also manifest themselves with my late wife always rejecting or ignoring me. In these nightmares she is often sat with her family, laughing and joking but completely ignoring me, even if I need assistance; a type of rejection. Her family didn't want her to marry me, so I was never accepted into their family circle. Even though we were happily married for 43 years, they still told people that their daughter had wasted her life marrying me.

I would really like to speak to a professional, like a Clinical Psychologist who is a Dr and trained for this type of situation; a Counsellor couldn't help as they aren't qualified and vary from Counsellor to Counsellor.

I've taken your advice Travelling-Blackbird and opened up with some of my own personal issues; something I've not done before in an open post. I'm human just like everyone here, although I'm not too sure about E-Dog...

Thanks for your views and suggestions; they were certainly helpful but as you can see by what I've just written, I do have quite a good insight into why these nightmares occur; I just need professional guidance in how to handle them or prevent them from continuing.

Scrib's........... Mike

scribbler what ive done in the past when ive been bad and could'nt wait for an appointment
is just turn up at the spinal unit in the morning and wait for the doctors to do their rounds

then just grab one of them its worked for me they have either sorted my probs on the spot or got me ane earlyer appointment
ive even had x rays after seeing a doc on the spinal unit
they wont tell you to go away !!

Scribs, my heart goes out to you. I have had nightmares such as you describe, finding yourself trying to kill someone who you love dearly. I have awakened in a sweat and it has affected me for days. Luckily it never went on as long as yours have (probably because I am better at throwing up emotional barriers, but that's a whole 'nuther story).

Since dreams come from the non-logical portions of the brain, perhaps you need to find illogical solutions to your problem. Maybe just before you go to sleep you can summon up one of those horrific scenes, then visualize them turning to something pleasant - see yourself putting down the weapon and giving your wife a big hug. World-class athletes use techniques such as this, I'm not an expert but I know it is possible to "re-train" your neural pathways. I dunno, it's worth a try.

I'm sorry, I have no words of wisdom regarding your cancelled appointments. Here in the US we tend to have two types of medical care: great and none. Tom is on Medicaid, he has had the same experiences as you describe, it is so frustrating for him. He has to arrange transportation two days in advance, but his doctors think nothing of cancelling a hour or two beforehand. Me, I am lucky enough to have insurance through my employer so I can see a doctor almost at the drop of a hat. But I think we've already beat the UK vs US medical care subject to death, haven't we?

I hope you find answers soon.

-Janet

Hi Scrib’s,

Sorry to hear what you are having to put up with at the moment & I do feel for you.
I have experienced some of the issues you are talking about so understand how you may be feeling, especially where the systems in this country are concerned.

I can’t complain about hospital, consultant or GP myself as to date I have been lucky & not had the issues that other folk talk about, but as for the likes of Social Services, wheelchair services, etc, it’s all one horrible joke. (I think it’s a case of if your face don’t fit)

I lost someone very close to my hart in 2002 & to this day still have the odd dream or sometimes nightmare involving that person which is bad enough but then it’s how it makes me feel the next day, that’s the biggest downer for me.
Please don’t take offence but have you considered talking to a grief counsellor, I only suggest this because reading your post, & you say it your self, you have lost someone close again.

I hope I haven’t offended you with this post but sometimes I don’t always get across clearly what I’m trying to say, but hay you may already be sorting it out just by opening up & getting things off your chest me old fruit cake.

I wish you all the best & hope things brighten up real soon for you,
CR

Hi everyone and many thanks for your support and suggestions.

Today I received an Email from my Spinal Unit for an appointment in September. Its a good move that they now email me, as I can reply and ask questions.

I do use the method you describe hooplady of turning something negative into something positive; here is an example.

A week before my wife died she looked out from our bedroom window to see a large plant growing. It was just green leaves, no flowers so she didn't know what it was and was even talking of having it dug up.

A few days later my wife was admitted to our local Hospice where she felt happy; my wife told me. "Everyone laughs here", which is what she enjoyed.

The following morning when I woke up, I looked out my bedroom window to see the most beautiful flower on that plant, so as soon as I was up in my chair I went outside and took some photos of it.

I then took them to show my wife who said, "what a Beautiful Lily"; she was so happy she'd seen it flower. That night my wife got worse and later died with me at her side holding her hand.

A year went by and every morning I could see this plant growing larger and larger, it was making me upset, as I knew that when it flowered my wife would have been dead a year. It was then that I made myself think on the positive side, and remembered how much pleasure she got from seeing the photo of that beautiful Lily.

Exactly 1 year to the morning my wife died the Lily flowered; it was if she was reborn in that beautiful Lily. That year the Lily had masses of flowers, so I now feel happy at seeing it there, as I'd turned my negative thoughts into something positive.

Its now coming up to the 2nd year of her death and the plant will bloom quite soon. I go there each day to check it as its something nice to remind me of her. When it flowers this year it will make me smile and think of her in a nice way rather than the horrid nightmares that plague me.

I've not told anyone that before.

Scrib's

Hi Scribbs

First i would like to say sorry to you on loseing your wife.

Sheffield hospital has been a bit worrying for me it's nearly 3 years since my SCI, i had my 6 month check then they cancelled my annual appointment for a few months.When i was there i had a bladder test where it was found i had a reflux bladder or something(in other words my bladder is filling a lot before i wee).I was told by that neurosurgeon who wheres a aussie hat they would keep an eye on it so off i went home, i got a letter for my next appointment which was a year later then a week later another reappointment for about 4 months.

Maybe theres nothing to worry about but i feel the same as you with Sheffields out patients appointments.SHIT and worrying!!

On a lighter note i have pleasent dreams about doing that to my mrs!!:)

Feel for you mucker.

Geez...

If Scribbler decides to contact his MP (and I think that is a good idea as politicians could do with understanding something about SCI before the big cuts come in), I think it is worth doing it via this website http://www.theyworkforyou.com/. They monitor whether your MP responds satisfactorily or not. When we last used this, the MP was on the phone within 10 minutes of sending the email!!

Good luck Scribbler. I'm appalled by your treatment.
August

Hi Scrib

Sorry you are having such a rough time. Is it worth asking to be referred to another spinal injury unit, under the new NHS rules you can ask for treatment to be carried out at a different trust, and the PCT will refer you on. Also agree with everyone else about contacting PALS.
Hope this helps
Big hugs
Jules
xxx

Hi Scrib

It's really frustrating when you can't get to the spinal unit like that and especially given the relationship you've built up with your consultant re your respective wives. However I do wonder if the spinal unit is really the right place to be addressing the psychological issues that you had already identified. It's not really spinal related (although having the spinal injury is clearly involved) and as such you should probably be talking to your GP about referral to a local clinical psychologist rather than waiting for your spinal unit to do so (if indeed they even can). Maybe get back to your GP and insist that she refers you on?

I'd encourage you to keep talking about it and opening up and if you can do so here then that's as good a place as any, I've not been through a loss like you so can't pretend to comprehend what you're going through but can only say that I'm just another ear out in the ether that is listening and hoping that helps in some small way.

Hope you find some peace

Russ

Hi again everyone and many thanks for your support and suggestions,

I've spoken to my GP about seeing a Clinical Psychologist, but the waiting list is months long. When my nightmares go away I feel fine, and think they've gone for good, but they suddenly return and send me spiralling downwards into a type of depression.

Its a difficult situation, as I need to speak to someone at the time I'm having these nightmares. If I saw a Consultant when things were fine, he or she wouldn't see me at my low point.

Regarding the Spinal Unit and the constant appointment cancellations. Some of you suggested my MP, who is Patrick Mercer, and like myself an Ex Serviceman.

The history of the Spinal Unit, especially Stoke Manderville is they were originally set up for Ex Servicemen who were injured in the WW2. Back in the 1950's, when I was injured, most of the guys on the Ward were Ex Servicemen; now its mostly RTA's.

Funding for SU's was always separate from the normal hospitals, but the Government changed it. In Parliament there was a Private Members Bill to keep the funding separate, so SIA Members were encouraged to lobby their MP's to support the Bill.

I wrote to my MP, thinking, as an Ex Serviceman he would support the Bill, but he said no.

The funding for the SU at Sheffield is now part of the Northern General Hospital, which I believe is part of the problem. The SU's now have to manage on the funding the PCT give them, which obviously isn't working. There are too many SCI patients and not enough Consultants, hence the constant cancellations with appointments.

I don't know if this is peculiar to just Sheffield Spinal Unit, maybe some of you from other SU's have had similar problems?

A while back when I was seriously ill and needed admitting to my SU it took ages to get in. When I got there I discovered AB people in the Unit using up beds that SCI patients needed. The General Hospital needed to get their waiting list down, so sent AB patients to the Unit. There were only 5 SCI patients on the surgical ward I was on; the rest were AB patients.

Thanks anyway for your advice and support; its certainly appreciated.

Mike

My wife's Lily flowered today so I dashed out and took some photos before the rain. I thought you might like to see it.


Click to view attachment

Its 2 years today, but I'm ok as the Lily flowered.

Click to view attachment

Scribs

Beautiful flower.

Thanks for sharing Scribs! That's such a beautiful lily and I'm glad it makes you happy and gives you positive thoughts about your wife.

Hi agian,

I thought I'd update you on the situation. A lot of things have happened, including my Dr's referral to the Clinical Psychology Dept about the horrific nightmares I was having about my late wife.

I didn't see a Clinical Psychologist but actually saw a Psychiatrist here at my home. He was nothing like you'd expect, he looked quite sane for a Psychiatrist..
He put me through lots of tests, asked questions and also got me talking; he was a very easy person to speak to.

I told him lots of personal stuff about my childhood and other things, plus the horrific nightmares.

This is what he said about the nightmares.

None of us can control our dreams, they are part of our subconscious. We can all murder people in our dreams but it doesn't mean we think murderous thoughts or have violent natures. We all get angry at times, which is a natural emotion. Some show their anger in violent ways but most of us control anger in more subtle ways; shout, swear or stamp our feet.

He thought my anger came out at night through my subconscious, manifesting itself in these nightmares, which he thought were caused by the sense of abandonment, isolation or loneliness. (which ever label you want to chose) Firstly throughout my horrid childhood, then from my injury and having to leave the RAF; then most of all from my wife dying. Since then its been my Carers continually leaving and now, from people like the Social Services who are really there to help but don't, leaving me with the sense of abandonment again.

He said I'm not an aggressive person, as some people would be violent towards others, but as Jan was the only stable fixture in my life, my subconscious anger and frustration against people like the Social Services and others that my sub concious feels have abandoned me, manifests itself in these violent dreams against my late wife.

I had referred to Jan as my Rock, so he quickly jumped in with the theory of me dreaming of smashing Jan's head into pieces was symbolic of my Rock breaking into tiny bits. The cynic in me thought that was a bit of psycho-babble..

He said I'm not a classic case of Post Traumatic Stress Disorder but he thought there were some underlying similarities; this is because he couldn't find a single mental health issue in my nature. (PLEASE FRAME THAT PART)

Although PTSD usually stems from a single incident, which causes flash backs and stress, he thought mine was very similar, as if you (he's referring to me) look at your life, its been a continual battle against all the same issues throughout my life, the loneliness or abandonment in so many parts of it and the uncertainty I'm now facing and feeling abandoned again.

Where as before I had a certain control over my life and had dealt with it very well, its now out of my hands and in the hands of faceless people. He thought I'd coped with things very well and felt I'd shown great foresight in understanding things.

Near the end, I asked for his professional opinion on my state of mind. Did he think I had some underlying psychological problem?

You wont believe what he had to say at the end of our 2 hour session, but I should have got it in writing..

So that's what he thinks causes these horrid nighmares. He said I probably wont be able so stop them but at least I can understand them. Smashing my wife's head into pieces in my dreams doesn't mean I'm evil or mad, its to do with people leaving me, the uncertainty of my care due to the Social Services plus things that have happened in the past; all types of abandonment.

I haven't had a horrid nightmare since he came but I know I'll get them each time a carer leaves, but at least I'll understand why.

I know when Zdenka leaves I'll probably get my nightmares back but its because weve got a good working relationship, professional but friendly, so I'm bound to miss her when she leaves, and that sense of abandonment will continue in my sub concious. If and when I do get them back, at least I'll know why, so it wont bother me as much.

Due to all the things I told him about my life in the 2 hours he was here, as he left he turned and said, "As a professional, I'd look forward to reading your book".... That will wear down a lot of pencils...

Thanks again, so don't worry about me; I'm not Mad Bad and Dangerous to Know..... Lord Byron

Mike

Hi Scrib’s mate,

Really pleased to hear you have got some answers to your nightmares, perhaps you’ll get some better sleep knowing the cause or at least not feel so bad when you do have them.
Sweet dreams,
CR

That's great news Scribs. Have you started the book yet?

Incidentally - just how much did you bribe this guy? ("he couldn't find a single mental health issue in my nature.")

He obviously doesn't read our exchanges here.

ps - send me your address. I'll post a box of pencils. Or you could type with knitting needles instead.