WASTE OF TIME: This is what I have to put up... - Pain Concern

Pain Concern

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WASTE OF TIME

Imagine1 profile image
37 Replies

This is what I have to put up with from the glorious NHS. I was referred to see a Pain specialist over 3 years ago, I got an appointment for the fracture clinic, WHY? my foot isn't fractured. My doctor phoned me to ask me why I have cancelled the appointment? I told him the reasons because I have seen umpteen specialists from the fracture clinic and there is nothing that they can do for me. He told me that the pain management team won't see me and referred me back to the fracture clinic, WHY? they would have noticed in my hospital records that I need to see a pain specialist as an emergency, due to the fact the pain in my foot is that bad I feel like chopping it off, I told my doctor this and all he said is if I don't go to my appointment at the fracture clinic then nobody will see me and I will have to cope with the pain on my own, and this is the caring NHS? I have contacted the Health Ombudsman because of this. Surely it is my human right to see a specialist for my pain? Has anyone else had this type of problem or is it just me?

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Imagine1 profile image
Imagine1
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37 Replies
cyberbarn profile image
cyberbarn

This sort of thing hasn't happened to me - yet! But a similar thing happened to a friend. Two friends actually. One had facial pain. The GP refused to refer her to neurology until she had been to counselling because clearly the pain was caused by stress. She felt backed into a corner. but the only way to get treatment was to have the counselling. After the counsellor wrote to the GP saying the patient was fine, please treat her medical conditions. Second friend was sent to psychiatry by the GP because he refused to believe she had early onset arthritis. Psych wrote back saying please treat this patient for their medical condition.

Have you talked to PALS? They are very good at sorting things like this out. Or at least they should be!

Bananas5 profile image
Bananas5 in reply tocyberbarn

Sorry for your friendds but neither needed referral to pain clinic

It is fomdly described by staff there as last chance saloon when all other possibilities have ben explored by relevant specialists

x

cyberbarn profile image
cyberbarn in reply toBananas5

It is true that for trigeminal neuralgia neurologists can usually treat, although in some areas it is the pain clinics that arrange treatment because that is where their pain specialists are based. And for the patient with early onset arthritis she most certainly did need a referral to the pain clinic as all other possibilities had been explored.

My point was that two people who needed treatment for their pain were instead referred for psychological treatment only as was the original poster.

Bananas5 profile image
Bananas5 in reply tocyberbarn

Yes totally understand

Have you been following any of the authors previous posts? tHAT MAY HELP UNDERSTAND !!!!!

X

Imagine1 profile image
Imagine1 in reply toBananas5

Why do you think Cyberbarn's friends didn't need to be referred to a pain clinic? have you read her post? all doctor's do is pass people on to a different department, so it get's the waiting list down. It isn't because other departments the waiting lists are going up. They need to do the job that they are paid to do?

Imagine1 profile image
Imagine1 in reply toBananas5

I have looked on the NHS website. Doctors tell you to ignore it. I have mentioned this to them and the doctor said every patient is different. One of the things it does tell me though is to go to a Pain Clinic?

Bananas5 profile image
Bananas5 in reply toImagine1

excuse my simplicity but could you send e link telling me I have to go to pain clinic. Could be useful for other member struggling.

All these years we have always had recomme4ndations by our GP and seems you have found an easier way

PLEASE SEND SO i CAN TELL MY CONSULTANT AND gp

thank you

Imagine1 profile image
Imagine1 in reply toBananas5

There is no easier way of seeing a pain specialist? I have waited for over 3 years to see someone. and still waiting. What I am saying is the NHS guide the website tells me that i need to see a pain specialist, which I already know

Bananas5 profile image
Bananas5 in reply toImagine1

nut you dsid, amd I quote, I have looked on the NHS website. Doctors tell you to ignore it. I have mentioned this to them and the doctor said every patient is different. One of the things it does tell me though is to go to a Pain Clinic?

Imagine1 profile image
Imagine1 in reply tocyberbarn

I have contacted PALS quite a few times now and they have been useless each time, so I have give up. It is disgusting how people are treated or not in my case with their pain. It is not in someone's head it is real? Doctors can't feel patients pain so they don't know what we have to deal with. They just think we are time wasters? WHY? do they really think we want to go to hospital if there is nothing wrong.x

katieoxo60 profile image
katieoxo60

Hello Imagine1 your experience is not unusual and if we refuse an appointment for what ever reason we are treated as if we can cope. Basically I understand the need to establish any underlying cause for pain and treat if necessary , but there is the other side of the coin when you do have a broken foot you don't get an appointment at fracture clinic, just sent to minor injuries and put on a virtual clinic list which in truth is a telephone answer machine, which do usually ring back later but only a nurse as I know from experience of a broken foot bone. I went to a pain clinic for my arthritis and was advised to stick with the doctors treatment of painkillers. As stated by someone else pain clinics are last chance saloon. As a sufferer of arthritic foot pain it is a case of finding what is best for yourself with foot pain , plus how far you can go without making it worse. I have been living with foot pain for many years ,sadly there is no magic cure. Plus sometimes the NHS answer just adds to the patients concerns. I personally feel we need clinics that can help people to accept their pain or disability and learn about ways to manage their health problem, or as a DR said to me a wholistic approach is needed in many cases of chronic pain and illness . Sorry I don't know a cure for chronic foot pain but a more sympathetic ear to your problem might help. Good luck.

Imagine1 profile image
Imagine1 in reply tokatieoxo60

Thank you for your reply. All I want is to see a pain specialist, just to advice me what to do? I am not asking for much, but too be refused is absolutely disgusting. I am a human being with feelings but they don't care about that. I know there is no miracle cure but if they had give me the appropriate treatment for my broken foot in the first place and not just left me to walk on it, then I wouldn't be in this pain. x

Bananas5 profile image
Bananas5 in reply toImagine1

The pain clinic will not see you so there is no point in making yourself worry and more angry.

You have a computer and all the info you will need about self management is there...pages of it.

Look it up and listen to what is says. It isn't a cure, there isn't onw, vut will tel you how to manage your pain

x

Imagine1 profile image
Imagine1 in reply toBananas5

I don't know what planet you are on? IT IS MY HUMAN RIGHT TO SEE A PAIN SPECIALIST. It is illegal not to see me. I have consulted a solicitor about this and that is what he told me. That they are breaking the law. It is strange though today I got a text message to say that they will now see me and contact them after December for an appointment. Probably because I told them I was speaking to a solicitor. I am not holding my breath though because I have had umpteen text messages like this and not seen anyone. As for looking on the website, doctors tell you not to do this because it is false information and to ignore what advice they give.

Judo1010 profile image
Judo1010 in reply toImagine1

After a serious RTA over twenty years ago, I have suffered from chronic pain, but all GP would ever say was wear and tear. So much so that possibly nine years ago I requested a private appointment with a neurologist, who after my appointment said you haven’t had a lot of support have you. Since that day I have often wondered what he meant by that remark. That was until I requested my NHS notes, which I received. Whe reading through them discovered the letter my GP had written to him, it is to long to post on here, but it ended this man is more a psychological case than a medical one in my opinion. Then I came across a letter from the very consultant that I was referred to privately. Then I realised why he said what he did, as ten years previous I had been referred to the same neurologist, who requested scans, the results show that I had quite a few skeletal problems, even a fractured sternum. Meaning the GP had referred me to the neurologist that had requested scans nearly 10 years previously, without even realising.

Imagine1 profile image
Imagine1 in reply toJudo1010

What annoys me is we as patients don't get told anything. We have to find out by looking at our medical records and then more often than not it is too late for any treatment that actually works. x

VS1955 profile image
VS1955 in reply toImagine1

And when you finally get your appt at pain clinic, don't expect too much. They were useless with me. Did absolutely nothing that helped with the pain 😔

Imagine1 profile image
Imagine1 in reply toVS1955

I am not expecting good appropriate treatment from them. I just need advice on how to cope with my pain. I have just got myself a job and I need to know how to cope with the pain while I am at work.

Bananas5 profile image
Bananas5 in reply toImagine1

Well done on new job, x

What is it?

Many here on this forum can give good sound advice on how to manage chronic pain and working

x

Imagine1 profile image
Imagine1 in reply toBananas5

I am working in a hotel as a room attendant, I have always done this but in the past I have had to leave due to my hands and foot. I am giving it one more try to see if I can do the job. I hate not working.

katieoxo60 profile image
katieoxo60 in reply toImagine1

Very True about the foot some things are created by poor response in the first place. One place you could get help is private physio, most first appointments only cost about £40 to £60 but they usually are very thorough and give suggestions on treatment aimed at you going back to them . But you don't have to go back , but you may get sufficient suggestions to help the pain on your initial visit. When I went in a foot pain flare they gave me acupuncture no use in my case but I did pay for three treatments. You could pay private to see a pain specialist too but that would be more costly obviously I don't know your circumstances , Pals as already been mentioned, Healthwatch can assist you if you feel the NHS is wrong. No one should be left without all options being offered, however many people are sent to Fracture clinics for pain . In your case they might be able to do an operation if it is due to the broken foot you suffered not being treated correctly. Poor joint mends can sometimes be rectified leaving you with no pain. Hope this gives you other things to consider, pain is not fun but trying to relieve it can distract your ,m,ind from it . Best wishes x

Imagine1 profile image
Imagine1 in reply tokatieoxo60

Thank you for your advice Katieoxo60, I never received physiotherapy after my broken foot injury so I did go private, but in the end I couldn't afford it. I can't work due to the pain I am in and I can't stand up for too long or walk very far, so I have to wait for the NHS to get their finger out and help me. I know about fracture clinics they are for broken bones and unless you have one of them they don't care about the pain that the patient is in. My husband knows this because he has a broken shoulder and they don't care about the pain he is in just the fracture. They advised paracetamol which are a waste of time and don't ease the pain at all.

katieoxo60 profile image
katieoxo60 in reply toImagine1

Have to agree paracetamol are only for mild pain . Which is not the case in broken shoulders or feet. These days they don't bother much about the fracture as long as it's healing. guess they feel there are more important health issues to deal with. I'm not working like you as I am classed as elderly at 75 but understand the difficulties patients have with NHS approach to pain sometimes, after many years of pain treatment while working. Hope you and your husband find a solution to cope with pain in respect of yours in the foot , and believe me I do know the feeling no one understands how it effects many normal activities we do each day. I take tramadol not just paracetamol and have done for many years now. you could give orthopaedic shoes a try they are much more fashionable these days and cheapish. Have to admit I prefer bare feet for round the house . Oh I spotted another cause of pain in the foot its caused by nerve injury which could be the case for you as it was a broken foot, nerve pain needs stronger pain killers too. Every best wish to you both.

Imagine1 profile image
Imagine1 in reply tokatieoxo60

Aww thank you for your kind words. I have developed arthritis in my big toe joint due to walking with a limp because I couldn't walk on my ankle/foot because of the break and now I have stage 4 which needs an operation but I don't trust the NHS to operate and i can't have it anyway due to my Complex Regional Pain Syndrome.

katieoxo60 profile image
katieoxo60 in reply toImagine1

Now that one would normally be a quick job but due to CRPS as you say it may not be an option for you. Have you tried a gel toe cover for pain, I used one for my heal they are very comfortable and ease the pain a little and as the saying goes every little helps. I think they are called bunion relief but they will work on arthritic toe too but not if it is very swollen. The gel type are easier to put on.

Imagine1 profile image
Imagine1 in reply tokatieoxo60

Aww thank you for your advice. I will try anything to ease it a bit. I have tried most things but not that. I was hoping before my Xray that it was a bunion, they are easy to take off and then my toe would be normal, but no lucky me I had to have arthritis. xx

Mitch48 profile image
Mitch48 in reply toImagine1

Hi there,

Try as much self help as you can, Tens machines are amazing things & can temporarily take the edge off of some of my lesser painful & different types of nerve pain from my extensive complex cervical & lumbar spinal injuries. I use hot baths, cold sprays, heat pads, heated throw, mindfulness, stretching, yoga, massage gun (fabulous) etc, each of those plays as part in my dealing with severe chronic pain including to also lessen the effects of muscle spasms which affect nearly my entire body. It’s not just medication that can diminish pain.

Regards,

Mitch

Imagine1 profile image
Imagine1 in reply toMitch48

Thank you for your advice. I have tried Yoga and mindfulness courses but they haven't helped much. I used to love doing yoga when I was fit and active but the problem is I can't stretch or bend my foot or toe and getting up from a sitting down position especially on the floor I can't put pressure on my hands due to all the problems I have with them.

I certainly can't help you with your NHS problems but I feel your pain. Literally. I have severe neuropathy in both feet but my right foot in particular feels like someone dropped a cement block on it. I swear every joint is in so much pain but even though I take Hydrocodone narcotics, it doesn't help much with that kind of pain.

Imagine1 profile image
Imagine1 in reply to

It is terrible isn't it? nobody understands our pain unless they have it themselves, because I have CRPS it feels as though I am walking on hot coals and the pain is terrible. I can't take any pain relief just to ease it a little bit, as my doctor said I will just have to live with it, there is no cure. A very caring doctor that I have NOT! xx

moyramm profile image
moyramm

I had a very unfortunate experience with the pain specialist I saw I have Atipical Facal Neuralgia which gives constant pain in my head face jaw and neck The pain specialist prescribed a pain medication that I reacted to when I told him this He said I could try a different one which made me sleep all day and night and made me spaced out This wouldn't have been to bad but I am a 24/7 carer for my husband and need to be alert to his needs When I told the pain specialist about how the medication had reacted with me his reply was put your husband in a home then then you can sleep all day and it doesn't matter Because I have refused to do this he now refuses to see me again

Imagine1 profile image
Imagine1 in reply tomoyramm

OMG! how ridiculous is that. As I have said in previous posts, the NHS don't care about people just how much money they want. This is what i am scared of being given the wrong medication. This has happened to me before, a paramedic gave me Codeine which I am allergic too and I nearly died because of this, I complained about what she had done and all they said was it will be on her record. How does that help me? how many more people has this happened too. It makes me sick. xx

Imagine1 profile image
Imagine1

Every day I am phoning to get a referral for any type of help with my pain. The problem is they don't care? they are not interested in me. When I had my accident over 3 years ago the injury that I had would have healed in about 12 weeks, the problem is because they didn't give me the correct care this is how I have been left. xx

Bananas5 profile image
Bananas5

from someone very very senior..it may make you understand

The state machine has failed collectively and by department. The NHS was broken before Covid, now it’s in tatters. Try getting a GP appointment for anything other than an unnecessary jab if you don’t believe me.............................................tTransport ain’ working and the country isn’t moving. Fixing all this, and much else besides, will take money. Unfortunately the country is virtually bankrupt.

Imagine1 profile image
Imagine1 in reply toBananas5

I agree entirely with you Banana 5, the state of the country is shocking and is getting worse if that is possible. Everything is broken and will never be fixed because we don't have the money anymore, We are billions in debt because of the corrupt furlough that we had, there is no hope for us? x

ZeN01 profile image
ZeN01

I Have had similar problems, I had an Operation on my spine that unfortunately did not work, they then wanted to do another Operation but I have said NO because I do not want anything in my spine and I do not want more shaving off from my spine, because I said this I have had to go back to my G,P and get Re-referred which means yet another M.R.I scan, I cannot be referred to the pain management until I have done this, I am not getting on at the N.H.S I would pay the Nurses double if I had my way, but its the Structure thats not right, when I finally got to my G.P he said you should have had a face to face a while ago ? when I said and how would I do that he seemed amazed that you cannot get an appointment, I have come to Live with pain, my spine my shoulders and my neck I retire in a years time and my plan is to get as much sorted before then, good Luck with yours .... Sorry for the Rant

Imagine1 profile image
Imagine1 in reply toZeN01

I am so sorry for what you have had to cope with. The NHS have never helped me in any way. I hate having to go to the doctor or hospital because I know it will be a complete waste of time. I have been living with pain now for 4 years and yesterday I had to give a job up that I loved. In the end I couldn't walk around the hotel where I worked, I had to take my shoes off because my foot was that swollen, my shoes were killing me. So once again I am unemployed through no fault of my own. If I had the relevant treatment then this would not have happened. I asked the pain management doctor for a steroid injection but he refused and referred me to yet another specialist hospital in Liverpool over 40 miles away from where I live to get a diagnosis that I know I have got, but he wouldn't believe me even though it is in my medical records. Good luck to you too. x

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