If pain treatment and/or desperately needed referrals are refused where can you get help? As a result of this treatment (or lack of it) in June 2019, I quickly needed to use crutches. Nov 2020, my severe bone on bone hip gave way, and I broke the good leg. Reluctance to answer my calls for help afterwards and no input on controlling pain, who do I appeal to. Of course the hip and knee are is excruciating, the IBS is out of control as is the asthma and the fibromyalgia has simply gone beyond help. I’ve been told that it isn’t good to complain about how one is treated by a doctor but I would like an explanation. Who could help me. I have been housebound since November 2020 because of these problems. Before that, I was shielding.
Please help if poss. Thanks Desperata.
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Desperata
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I’m so sorry to hear of your struggles to get any help or relief from pain. I don’t know what area you live in, but could I suggest you phone your surgery again and request an urgent review for the appropriate analgesia. You are also entitled to a visit from the community physiotherapist and occupational therapist for rehab. If you are struggling with daily tasks, these teams are able to arrange the appropriate support. Your local hospital trust should have the number for your local patient advisor for any complaints regarding your treatment and you can find this either on the website or by calling the hospital switch board. Also, if in England, your GP practice will come under a Clinical Commissioning Group and complaints can also be raised with them. My advice would be to stress the the pain is worsening and if you can give it a score (1 for no pain up to 10 for excruciating) this will have to be documented by whomever you speak to. Stress that your mobility is being affected by this. I really hope you are able to get get sorted with all of this and wish you the very best of luck, Amanda.
Thank you for your suggestions. I can no longer leave the house to get physio etc. Anyway since March 2020, physios will not see patients in person, in our area. I was referred by Orthpaedics in January 2020. I have had three phone calls since August 2020 but I am too limited & in too much pain from my hip and knee to do their exercises, particularly as FMS is that much worse now.
I am, hopefully, going to get the Total Hip replacement in a month or so. Perhaps I will get more help from someone after that. The OT came & was helpful. We had already bought what we needed but she had other useful ideas. The hospital A&E dept. provided wheelchair and walking frame.
Our surgery will be an obstacle concerning the pain treatment. This is partly why I feel trapped. Each patient has a named doctor. Mine won’t entertain the discussion about adequate pain relief and other doctors at the surgery will not countermand the opinion of one’s own doctor. I only have some morphine now because the hospital sanctioned it for the fracture.
Your other suggestions Re. CCG etc will be worth a call.
If you already have an orthopaedic consultant, you can try ringing their secretary to request a letter be sent to your GP re pain relief. That you unable to get your GP to address this yourself is appalling and frankly, they are failing in their duty of care. I do write this as an health care professional incidentally so have a good awareness of the correct procedures for pain management and from what you say, your GP is ignoring your needs. My only other suggestion would be to ask either the OT or hospital to have this discussion on your behalf. I often ring GPS on behalf of my patients to request medication reviews but I have to say that in the area I cover, they are all great. I do feel for you as I know your pain levels will be exacerbating the fibromyalgia and vice versa.
Thank you for more good ideas. I certainly will use these other approaches. Since I was fortunate enough to break my good leg because the bad hip gave way as I was getting out of the bath in November, the surgeon gave me some morphine to help and has upgraded my case to ‘priority urgent’ and I have the pre-op on Tuesday. I say ‘fortunate’ because, as I said, the GP was refusing my referral. If I had not broken my ankle, I would still be waiting. Surgery only just started up again, so I am lucky. When I see the orthopaedic surgeon I shall use your suggestions to try and address my situation.
I am so appreciative of your good suggestions. When I feel stronger I will pursue an explanation of the determined effort to deny me access to MSK Assessment Services and also the orthopaedic department. It was a very curt response ‘you must not refer yourself. When your knee is better your hip will be ok!’. The knee bone is obviously not connected to the thigh bone.
I’d suggest writing to the Practice Manager (bypassing your actual GP) and explain that you are being denied pain relief. Explain how this is impacting your physical and mental health.
You could also consider swapping to a new GP surgery if this one does not up its game.
Thank you LoneEra, for your suggestions. When I am feeling stronger and recover some energy after the hip replacement surgery ( hopefully, in a couple of weeks or so), I shall write the letter to the Practice Manager. I must make sure first that it would be a confidential letter which only she would read.
I did write a letter once before and although I had specified ‘private and confidential’ on the envelope, it was opened for all members of staff to read, from reception staff, office staff, medical staff etc. When I challenged this, I was told that it was the practice that all incoming mail, confidential or otherwise, should be opened and entered on the notes. I really had wanted the details of my letter to be kept confidential.
If I can look into this and find that my issues will not become public as soon as the letter arrives, I could do as you suggest. A new surgery may be the only option.
Hi Desperata , on reading your post I feel so angry about the way you are being treated. I don’t know who told you that it’s not good to complain about Drs, they like anyone else are accountable for the care they give you, but in your case, the lack of care in the way they are treating you.
Firstly you make a complaint in writing to the Practice Manager, stating all that’s happened, and make a request to see another Dr that understands Pain Management. if nothing happens, then you can either complain to your Care Quality Group, or NHS England. You can also complain to PALS. It’s important that you first complain to the Practice Manager, and often it doesn’t go any further, and they bend over backwards to help you. Don’t be intimidated, you deserve to be treated better.
I truly hope that you can get the help,, and the pain relief you deserve.
Hi Greenpeace, your suggestions chime with those of a few other people and they are very helpful ideas. There is an issue around confidentiality at our surgery. Once, a letter I sent marked ‘Private and confidential’, was opened by in the general office and put in my notes for all members of staff to see. It was an embarrassing experience. I was told that it was their practice to open all incoming mail, regardless of who it was addressed to. It is this that has stopped me so far.
Thank you for sending such helpful advice. I feel better already having shared the experiences and learned that others also feel that this treatment is unacceptable. In the end one’s mental state is so affected as to feel maybe I am overreacting. This feeling has been cleared up for me.
What an excellent question!! Sometimes I ponder how many folks are disabled due to drs neglect and indifference. Oh it's her, complaining again! Get rid of her!! I think it's a problem. Folks complain because there is something bugging them. Drs ought to enjoy figuring what it is. Not taking the easy way and gaslighting.
Did folks notice how the initial Dr response to long covid was denial? Just like with CFS ME and fibro. So interesting. And this time because of the volumes of people and how covid is world news, they soon had to backtrack.
I think this is likely to be quite common. We are reliant on the good will of doctors.
Like most other patients looking to ease their symptoms, I have experienced those who will acknowledge it but not go as far as trying to treat. There have been those compassionate ones who try their very best and then, as we all know, there are those who will not address the problems.
A rheumatologist in a major city hospital, just 2 years ago, told me that although she believed in the condition, there were those in the team who still did not. This attitude in 2019 isn’t good! I was asked some 10 years ago to help medical students understand the conditions. The students were very appreciative but trying to break through the resistance is still difficult. The students were from the same hospital. So there is still hope.
So much has been achieved but there is so much more that needs to be done. I hope I’m not being naive again thinking that interest in ‘Long COVID’ will progress help for FMS/CFS/ME 🤞
It was interesting to see Drs used the GET treatment that has been foisted on and failed so many ME/CFS patients as their first tool. Damaging, they said. Guess what? It didn't help Long Covid either. But always worth a try hey? How much harm done while there were trying? Who cares?
Drs need to stop gaslighting their patients. Or, the Trainers need to stop giving Drs the impression that all their patients are going to be attention seeking , lazy and foolish? Trying to con a sicknote! It's not fair. And it's not healthy. It is damaging. And wrong.
Thank you I didn’t know about advocates. As I’ve been severely affected with FMS/CFS since the 1980’s over time I have learned to be bolder with doctors and consultants. In the main they have been understanding , Nurses have been more difficult. ‘Oh we know all about people like you’. Following that procedure I couldn’t use my arm for 4 months! The GP that I have had the most recent difficulties with said I would need to pay for physio. It cost me £350. Fortunately I had savings. Many people do not.
Advocates sound like a good support when up against these resistant people. Aside from fibromyalgia, treating arthritis has been familiar for many, many years so there need not have been a problem. Perhaps an advocate would have helped. Naively, as things deteriorated I thought he would become more reasonable. I must learn from this lesson.
Hi Desperata, if I was you, I’d change my doctors and then make a complaint about your present doctor and hopefully you’ll get the help you so obviously need. Wishing you well.
Thank you fighting fatigue, I may well have no other option.
Unfortunately on Tuesday 6th April, issues were further complicated. Finally I was having the pre-op assessment and amongst other staff dealing with bloods, BP, OT etc., the Specialist Nurse Practitioner took relevant details like list of meds, allergies, medical conditions. Any important details in preparation for Total Hip Replacement Surgery in 3 weeks time. I took printed copies of necessary details, as I considered them important.
The conditions were diagnosed 1980 onwards. I still have consultants’ letters
I saw a glimpse of doubt about FMS but nothing stated. She told me that the lists had been helpful.
Today I received a summary of the visit.
I was astonished and angry. I have used certain info before, for previous surgery. It was 10 years ago but both surgeon and anaesthetist were very appreciative. But not the nurse on Tuesday. She didn’t want to look. They are the various medical/drug precautions to consider during surgery, for those with FMS by Dr Charles W. Lapp MD and was printed in the Family Magazine and an article by Devin J Starlanyl.
I was shocked to discover the version of the visit on Tuesday had misrepresented a number of facts.
There was a medication printed which
was not on my list but there it was in print.
The most disabling of the conditions of Fibromyalgia diagnosed long before 2004, with all its other added extras, which as you can imagine, needs acknowledgment, had been removed from my list. I had a new condition, suddenly, I had an anxiety disorder!
Nobody told me and a date of diagnosis wasn’t given.
I think she looked at meds. & seeing certain ones which are used for anxiety, depression and Amitriptyline & others, perhaps she came up with her own diagnosis.
I won’t see her again before hip surgery.
Can anyone suggest how I should get these mistakes rectified? I should be so grateful. As you can imagine, my brain is in a pickle, I am so cross. I feel as if I’m in a never ending ‘Wonderland’, rather like Alice!!
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