One thing I suppose that we as patients need to do is to act in partnership with your GP, It has three tracks the GP, you and the Specialist, I suppose this can break down somewhere in between, especially when we all need and unable to give the attention that we all require.
My experiences regarding this as with many others in this critical partnership sometimes has been patchy. If we have been to pain clinic and taken the professional patient course these help us to talk and give our opinion to those professional bodies. as it sets out all our responsibilities. so we can get something out of a now critical NHS.
We I suppose need to understand everyone has needs, we all need to facilitate them in this tri partnership.
Now we should always ask for that critical copy that arrives to you and the GP from a very busy specialist. if we do not ask for this letter it can make life very difficult for these three parties
Sorry if you do not agree, what sort of problems have you had in your regions??.
All the best
BOB
15 Replies
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I saw a specialist in November - when I saw my GP in February, the GP didn't even know I had seen the specialist. Thankfully I'd asked the Consultant to copy me on correspondence, and had a spare copy with me (great having a scanner). This was the first he knew about my consultation. To be fair I'd waited 11 months. Not only that he thought I was seeing a male consultant, in fact I'd seen the Head of Department a lady. So thankfully I was grateful I had a copy. Saw the GP a few days ago, still no sign of the original letter.
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Hello no-one
The copy is yours and you can take it to the doctors when you go to the surgery it helps you ask the questions that you need to know, as it kicks into play your memory
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Never had copies before from any Consultant, so now when I'm with them I ask them specifically to copy me in on the letter.
I did not know about the letter being given/sent to the patient, back in 2010 I had treatment at a pain clinic, I was told I needed someone to take me home after and explained I had no one, I had to sign a form agreeing to be responsible for myself. Something went wrong and I collapsed, I was not offered anything other than to sit in a full waiting room till I felt better, I declined this, I think for obvious reasons. When I asked my GP what the consultant at the pain clinic had said, I was just told patient given six injections in back, and what they contained. No mention was made of there being any problem at the time of the treatment, when started to explain to my GP, he cut me short with the words ' difference of people ' . Other people I know of have been required to stay in hospital after this treatment, I was told in writing to take my meds, nightgown, dressing gown and I struggled with my two elbow crutches and a bag containing these required items. They were not needed as I was ushered out of the hospital so very quickly.
Had I known about the letter available to patients I would have taken this further, even though no mention was made of there being a problem.
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Hello
So sorry for such a rotten experience this type of thing has been happening a lot lately, I was dealing with a relitive who had dementia, was taken in from a nursing home and returned back at midnight so as not to take up a bed, needless to say I reported this at a LINK meeting and is not uncommon. I was taken in with an overdose of Opiates and was let out when they thought ok to catch a bus over the christmas period, AGAIN I reported this at the GP surgery. Some meetings between patient groups and hospitals have been very vocal with regards to this type of program. It comes to the bottom line that everything for efficiency , from management. I suppose I will see more of this in the future. hopefully it will sort out when we get a government that is not looking at the bottom line.
With regard to the letter from the hospital to GP you are now entitled to the report that a specialist sends to the doctor, it generally arrives at the same time as the doctors copy at your home address, ask the clinic receptionist when you check into your appointment. You can then call GP to discuss the report together.
There is many problems with the system at this moment of time many of the faults should NOT happen
All the very best
BOB
ask for copies of all consultnts letters us patients are often the go between or missing link between consultant and gp x
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Hello summer.
these copies are your rights to have although you have to ask at each clinic that you attend. This can give you some extra control over the tripataid that are dealing with you
WHERE TO START!!! Fetch yourself a cup of tea & read on (or just skip to the end, I've been bottling this up for years!)
-When all this pain stuff started I had an MRI which showed up something potentially dodgy in my brain (it turned out to be nothing) and I was referred for a second opinion. The consultant broke the news by handing me my medical notes to read for myself. I have some medical training but was unable to process it properly because I was in shock. I was left to go home with no information or support.The hospital lost my notes for 7 weeks so I was left hanging for all this time... Meanwhile I went to my GP but the hospital hadn't sent him a letter about it so he couldn't help either. When I did go back for the second opinion, even though the second consultant had phoned me to tell me not to worry but he'd see me anyway, the clinic staff got confused & sent me to wait in the pre-op assessment room, so you can imagine my panic as I wondered if I might need brain surgery after all! (I had a similar experience a few months before at a different hospital when the hospital volunteer took me to the wrong department, left me sitting there for half an hour and I missed my appointment, but that's another story).
-At my original pain clinic appointment I was offered acupuncture "soon" in the words of the consultant. The receptionist then informed me there was an 18 month wait. I got in by accepting a cancellation 7 months later (sorry to anyone else in the queue). Even though I was booked in for 6 consecutive appointments one of these was cancelled because they were fully booked (I don't get it either). So I missed treatment that week and was then told that it was just tough, I wouldn't get the appointment at a later date. I kept phoning up until they got me an appointment. There was one receptionist in particular (who apart from getting my first name & surname muddled up most weeks) just didn't seem able to cope and i really worried about her mental health!
-After the acupuncture I was told by the doctors I'd be reviewed in a month. I waited 4 months - had to ring up for the appointment in the end. I did get an apology from the consultant but it wasn't really his fault.
-I was given an appointment for an injection but on arriving at the clinic the consultant told me I couldn't have it - the reasons were a bit vague. I was started on a course of treatment and told I needed to attend the pain clinic every 2 weeks to complete it. The receptionist told me she couldn't book an appointment there and then & they'd post it to me. It didn't arrive so after a week I phoned up & eventually got an appointment for a month later, having had to go via the consultant's secretary & threaten to make a complaint. I didn't have the treatment again because of side-effects but that wasn't the point. The consultant was mortified that I'd waited so long and bent over backwards to ensure I got regular appointments after that because I was quite unwell. BUT the only way he could do this was to play the system and pretend that I was going for acupuncture because that was the only way the hospital allowed a patient to have repeat appointments so close together. On one occasion he practically attached me to a nurse and told her, "make sure this lady doesn't leave without an appointment card filled up in her hand."
-I had a partial nerve block & was told I'd be reviewed by phone a month later. The phone call never came & I gave up
- another pain consultant (who was providing another opinion) wrote to tell me that I had cervical ribs on my x-ray and he'd discuss this with me because he wasn't sure if they were related to my pain or not. My osteopath felt that they very much were. I tried to discuss the ribs at two subsequent appointments but he ignored me completely and changed the subject - I can only assume that he didn't know the answer. (I've since got a new consultant who has investigated the ribs fully)
-I was told by this consultant to try a different medication and he'd write to my GP. I waited 2 weeks before going to get a prescription but the hospital letter hadn't arrived so he quite rightly (especially as I couldn't remember the name of the drug) couldn't prescribe anything, and it was another 2 weeks before we got anywhere with it.
-I was told I needed a nerve block under sedation. I wasn't told when this would happen but assumed it would be under the 18 week wait for treatment that was the local standard. At about 17 weeks, with no appointment letter in the offing I phoned up and was told that it was a 12 month wait for that procedure, but there was a cancellation so they'd do it sooner. In the end I waited 7 months.
-Turned up for said nerve block. The consultant (the one that didn't want to discuss my cervical ribs) changed his mind. He blocked a different nerve, with my reluctant consent - I was desperate for something to relieve the pain. He was very definite that it would "get rid of your pain," but it made things worse. I was discharged home with a standard letter which stated that I had had the nerve block I'd originally been booked in for, and not the one that was actually done. I was so disgusted I couldn't be bothered to take the letter to my GP.
-On review (which actually happened when they said it would!) I was discharged for failing to get better. I was told to increase my medication even though the same consultant had told me to cut it down a year before because it had been making me unwell.
-Two years ago I had another MRI & was given an appointment to go back to the pain clinic (by now I had changed clinic & consultants) to discuss the results. I then received a letter to say I didn't need to attend the clinic and they would phone me instead. I insisted on a face-to-face consultation & the secretary eventually agreed to organise this. When I turned up my notes were missing because I was still on the list for a phone review!
At no time did I complain formally, although I did threaten the pain clinic with a letter when they cocked up big time with the two-weekly appointment that never came. In hindsight I should have done something. Ironically I was working for a different health trust and was under huge pressure to manage a waiting list and communicate with patients, something that for the most part we managed to do. I make it my job to be honest about waiting times even if they are long, and to NEVER promise something if I know we can't provide it. It's not difficult!
My more recent experiences have been good. I have been able to book appointments before leaving the clinic, although last time they told me they'd have to send the appointment via the post. I got it quickly enough but I'm still worrying that when I turn up they might not do what I'm expecting. I'm afraid I'm like a dog with a bone when I leave the clinic now - I don't leave until they give me an appointment if I possibly can, and have had to be quite assertive with some receptionists.
I have had some letters from consultants. Some of the letters are a good record of what happened at the appointment. Some are not, and I know how hard it is to dictate letters clearly, but honestly, some of the typos are embarrassing. Our GP practice has a policy whereby if you want copies of letters you can ask for them but they say they don't automatically send copies to all patients for everything because it would be a huge task.
All this has happened over a period of several years, and things do seem a bit better. I think the system is to blame - it can't cope with the number of patients. And on one memorable occasion I was sat in the waiting room when the nurse in charge told the staff to cancel the entire afternoon clinic as the lift to the clinic had broken, therefore the patients wouldn't be able to get down the stairs. Fair enough you might think, except what about the patients who could manage stairs? How inefficient is that?!
This has taken ages to write, but Bob, you did ask! I feel so much better for it but fear it may have sent everyone else to sleep.
Hello teadrinker, well done and thank you for getting all that written, and in an interesting way, was certainly not boring. The part that amazed me was the nerve block that you went for but didn't have, but were talked into another, which was written up as the one you were booked in for and that did not help anyway - that is the kind of thing that makes me so mad. These medical folk seem to think they are above having to answer to anyone for anything, and know they have their backs covered by other medical folk, and if money becomes involved, they have insurance to pay out for them.... will not refer to the other well worn get out clause!
we all do make allowances for them as being over worked due to the increase in population and the fact that people are living longer, really this not good enough, it is just another excuse to hang a multitude of things gone wrong onto.
Hope you by now have had a cup of tea, and a treat to go with it, you sure earned it.
This type of thing in the NHS is unforgivable, when things go this way you really need a friend in the system, i do not know were you are, although I personally have heard some real horror stories in the south of this great and pleasant land. In hospital you should have asked to talk to the patient group PALS they would have acted as a go between acting on your behalf. In April the new HEALTHWATCH will act as an enforcable ?, friend when things like this happen. and will work to sort out this sort of problem. This is long overdue and should make a difference
When I visit some clinics they say want too see you in two months although they will not give the appoitment and have to phone and make the the return appoitment say one month before needed this extends the period that is far extended say by a further two three weeks. So it goes on and on, this extends the period of time between visits. This all happens quite often.
Theire is no excuse for this, it is a sign of a service following a crisis in its operations
that has been bad in many areas.
You all need to fight your corners and not accept bad practice, even when the system is creaking at the seams
I gave on ilink/health watch a long time ago. I have discovered the Health and Wellbeing board and the Health Scruntiny board meetings at the local city council.
The above are two inititives that are council run. These hold public meetings where the public can communicate both to council cabinet members, interested councilers and NHS bosses all at the same time.
I have presented complaints to the hospital and got nowhere. I presented a complaint to the Health Scruntiny panel with the HNS boss from a local hospital present saying what they are doing to get a problem sorted.
For the first time action was taken on a complaint I have made.
Well done getting it written down. Now print off a copy somehow and send it to you MP. Let him/her find out what the hell is going on in that pain clinic because if that's what's happened to you imagine everyone else! Mid staffs? Complain please. Help everyone if you have the energy!
No, not Mid Staffs and not the south either, though I don't feel able to say where. I feel it's too late to do anything about the things that were badly wrong (like the missing notes & changes in treatment). I can see why the treatment was changed (at least I can having had it explained to me some time later by another doctor who picked up the pieces) but it was the way it was done that was handled badly. At the time I had a lot of difficult things going on in my life alongside the pain and just getting through the day was hard enough, let alone making complaints. I suspect this is the case for a lot of people.
I am now more assertive and wouldn't put up with that sort of thing. I have probably also been lenient because I have a realistic view of what the NHS can provide but there is no excuse for a lack of the basics like courtesy. I am probably a bit of a rottweiller about this with my own students. There is nothing like being on receiving end to make you a better clinician. I have certainly used my bad experiences to improve on things like appointments and waiting times.
I have not mentioned all the wonderful people who have helped : the many GPs, trainees and receptionists at our surgery, the nurses who have literally let me cry on their shoulders, my incredibly patient dentist, the physio who helped me make sense of the pain, the surgeon who tried absolutely everything he could to make things a bit better, and most importantly the consultants & registrars who have taken the time to listen properly and haven't thought I was going bananas.
I found a page on the NHS CHoices website where patients can leave feedback about services, good or bad. If you click on local services you can leave comments there, and it does seem that NHS managers read them & respond.
Hello teardrinker
Many do not realize that on NHS choices you can register and find out a great number of things including health and the various services that are done in various areas of the country, it also can help when things go pear shaped, I always refer to it when I need some sort of feedpack or help those who need assistance.
As we get older we all become less understanding with the society we live in, and rightly so as life becomes more dizzy in your sixtees. Like today I have just taken two days worth of tablets by mistake, feeling sleepy although ok, now she generally looks after the meds so she is very annoyed with me it is slap on the wrist time.
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Tear in shoulder tendon
Where Do I Go Now????
KEEPING A HOLD
All us pain sufferers must come together and fight!
