To have expected more from my GP

(53 Posts)
GoodnessKnows Sat 08-Mar-14 06:12:52

Having been to the GP with hip ache for years and been given no explanation or offer of treatment other than an immediate pain injection (which I refused as I wasn't happy to have that if they couldn't tell me what it was or how it could be remedied), I asked my him for a referral to a private consultant.

Following 2 private CT scans, a tumour was discovered. It was in my spinal canal and spinal cord (sacral tumour). When this news was delivered I was, understandably in shock and had to wait for the op to remove what turned out to be a cancerous tumour. The possibility that it would be a cancerous tumour had been present from the outset, although the surgeons had believed (appearance on MRI) that it would be benign.

I am eternally grateful and ever so aware for having had private insurance and the confidence to ask the private consultant for am MRI when even he told me nothing would show up to explain my 'hip ache'.

Here's the thing...
I'm not cross about the GP not having found it. I'm aware that it was a typically asymptomatic tumour and that the hip ache was nerve damage as a result of something that would've been hard for them to find. It's thankfully been removed (5 weeks ago) and while I'm physically recovering well, the gravity of it all has suddenly hit home and it's been quite an emotional time.

My problem is this:
I gave the result of the MRI and the consultants's letter to my GP when the tumour had been found. I was in a state maaaaaaajor understatement. GP receptionist asked whether I wanted an appointment or a call. I asked for a call. To his credit (and with respect to the seriousness of the 'situation', ,y GP did call me the next morning, before surgery. But he didn't ask to see me. I was left alone, waiting, in bits emotionally, crying sporadically when my son asked me to fun to the car park with him (wondering whether I'd be able to walk again after the op., etc.). It was such a hard time. That 6 week wait for emergency surgery was worse than the op and recovery time which ain't been a walk in the park, let me tell you I'd do it all again rather than go through The Wait-- .
I'm still not getting to the point, am I...
I didn't want to make am appointment with the GP before or after the op about my emotions because I didn't have any medical need to. But I did need hand-holding. By my GP. By the person in the community responsible for my medical care. I thought.

I was discharged and given a letter which had also been sent to my GO stating that a Duty Nurse was supposed to home visit daily to inspect and dress my wound although it had only just been undressed, it was shockingly raw. I can't drive for at leeeeeeast 6 weeks.
No Duty Nurse has ever been to visit me.
The on,y GP visits have been to check I have exactly the right number of the high security type drugs I'm now on. No pain management discussions. Appointments two weeks apart.
Left.

I'm resourceful. I'm assertive. I'm also not stupid. I called the hospital that discharged me and begged to speak to the Pain Team that were caring for me in hospital. 2 minute chats on a weekly basis (they're not supposed to do this but have been so kind) have given me guidance of how to reduce my meds ALONE.
If not for them, I'd have stayed on all the drugs I was on 5 weeks ago: oxycodine, oxynirm, gabapentin, ... the list is (almost) endless.

I'm grateful to them and am grateful to a cancer charity who I called in tears on Monday. I was having am emotional break down but like a post traumatic shock / survivor's guilt thing. Not logical, guilt-ridden (as know I should be so grateful and was only grateful and positive for the first 4 weeks post op.). Friends and family didn't understand this huge emotional shift and nor did I.

And finally, here's my point... my GP has been an invisible bystander to what has and is still (early days and yet mire dodgy/ questionable CTs) the most awful and real health scare /threat and upset in my life (not the first but the most intense in terms of time). Until I find out that it was cancer, I had nowhere to turn. I called Macmillan twice before (biopsy inconclusive pre op) but felt fraudulent and like I was taking their time and money just as was worried in bits but prob not cancerous a/c to consultants I needed my doctor then, I need him now. Not to go on a waiting list for counselling when I can't drive. But to see him for 10 mins a week to talk. To know he cared. To know that he was behind me medically when the black hole opened and I'd fallen in.

I feel for those who are in that situation now or who may be at some point. I have friends and family and they we're great. But I do feel that the silence of my own GP failed me.

HaPPy8 Sat 08-Mar-14 06:25:52

I'm sorry for what has happened to you it sounds very scary and hope you are in the mend soon.

Have you actually called your go and asked for an appointment to see them? If not I think you might be a little bit unreasonable as not everyone wants this, and it it is not unreasonable if gp to think that if you are now under care if hospital team regular follow up in community not needed. But if you have asked for an appt and they aren't giving it to you are not unreasonable at all. Get well soon x

Glasshammer Sat 08-Mar-14 06:26:33

Is there any way you could change gp's? Also put in a formal complaint about not receiving daily nurse care or any advice about coming off the drugs.

I am worried that you haven't been seen by the nurse to care for your OP site. I would expect some care from your GP, but perhaps my expectations are too high.

I don't really know what to say, but didn't want to read and run. I thought it was important to reply.

thanks towards your swift and full recovery.

DrewsWife Sat 08-Mar-14 06:29:36

I am so very sorry or the trauma that you have been through. I feel your pain and anguish in your words.

I don't want to sound mean but you are bein unreasonable. You need a qualified counsellor. You need to speak to someone who can break down your feelings of fear and terror and upset. Your GP isn't that person.

He has a caring role to perform but it's primarily to see sick people who need his help to get better. His appointments do not allow him 10minutes.

Get a referral to a mental health team. They deal with the trauma. I know as I had a cervical cancer brush in 2012. Xx.

GoodnessKnows Sat 08-Mar-14 06:45:34

Thank you, DrewsWifec makes good sense. Thx for your understanding and good wishes everyone else. Xx

I'm so sorry that you've had such a terrible time. I've little experience or advice to offer, just wanted to wish you a swift recovery and s gentle hug

GoodnessKnows Sat 08-Mar-14 07:06:27

Thank you, Resting. Xx

NightFallsFast Sat 08-Mar-14 08:25:26

What you've gone through sounds horrific, and I'm not surprised you've felt how you have and have struggled through all the emotions.

However GP surgeries are at breaking point, and don't have time to see all the people who ask to be seen in a timely manner. I think expecting your GP to find out about and phone up all his/her patients who have had significant health problems (like significant diagnoses, long or serious stays in hospital etc) and may need support (which will be several per week) is unreasonable. If you need an appointment you should book. Some people, like you, will want that added support. While others will feel like they're forever going to one appointment or another at the hospital and wouldn't appreciate more medical input.

poubella Sat 08-Mar-14 08:31:53

I was diagnosed with a rare type of cancer and had all the emotions you described pre op. I never heard from my GP either.
My GP was supportive during appointments that I made but they never contacted me. I had to make appointments or ring them if I needed a sick note / prescription.
I think they just don't have the resources to be proactive and just react to direct requests. Unfortunately when you are in most need is when you can't make a request.

poubella Sat 08-Mar-14 08:34:53

Oh and when I saw my GP she said that they had all discussed me at a practice meeting as my cancer was very rare and the symptoms were hardly there so they had 'learned a lesson that it pays to be cautious ' as she nearly did not refer me on for testing. This means they were all aware of my diagnosis and still did not contact me in any way or offer any support.

RevoltingPeasant Sat 08-Mar-14 08:43:19

OP I am no surprised. People on MN often talk about GPs as having a role as family doctor or as holding people's hands throughout their life journeys and suchlike. In my experience this is not the case and it is quite an impersonal point of contact.

When I had major kidney surgery my GP signed me back to work without having seen me, several weeks before (as I later found) the consultant thought I should have gone back.

I think your feelings of terror are totally justified and normal and I agree with others that you should get counselling and also change GP. It is very big of you not to have any bad feelings around the lack of diagnosis but I think you will probably not feel able to trust him again.

SomethingkindaOod Sat 08-Mar-14 08:48:29

In our PCT it's the district nurse team who dress post OP wounds, could you double check with the GP about this?
flowers for you, what an awful time but you are being a little U. GP practices don't have the time or resources to do everything the doctors or the patients want them to do and they can only work with the information available to them, it might be worth checking what has come through to the surgery from the hospital so you can be sure they have all the information (bitter experience of the internal post system here).
Again wrt to pain management and reducing meds, I thought that's the job of the relevant department rather than the GP. It sounds like you've been left to drift by the whole system rather than your doctor in all honesty.
In your shoes I would make an appointment to talk about the 'aftershock' of everything that has happened, that's something they may be able to help you with.

poubella Sat 08-Mar-14 08:56:36

I was never offered counselling by the hospital or my GP despite being left with lifelong problems post surgery. I am paying for counselling now.

Lizzabadger Sat 08-Mar-14 08:58:55

I am sorry you are going through such an awful time.

I would ask the cancer charity if they can recommend a counsellor and then book in with them as soon as possible.

In the meantime you may be able to get support from online forums.

I doubt that your local CMHT (mental health team) would take you on unfortunately. They tend only to have the resources to deal with people who are psychotic or a high suicide risk.

I too think you should change GP. You will need to book appointments when you want to discuss medical issues. They are unlikely to be proactive or to be able to offer regular emotional support unfortunately.

I wish you all the very best. The positive thing is that the tumour was found in the end and treated. I'm crossing my fingers for a full and speedy recovery.

UnderThePink Sat 08-Mar-14 09:25:42

I'm so sorry to hear what you've been through..I can't imagine what you must be feeling.

I would recommend seeking counseling support (probably private as most NHS trusts don't offer counselling). Obviously speak to your GP but you may not need referral into mental health services - I think what your describing sounds like a completely understandable and normal emotional response to what's happened and not necessarily an acute mental health problem. Good luck and take care!

FraidyCat Sat 08-Mar-14 09:27:01

I'm usually the first to complain about the quality of GP services in the UK. To get what I was used to (growing up abroad) we would probably need to double the number of GPs. Then we could have the level of service that you and I (and people in most other first world countries) expect. I think the number should be doubled, but apparently the average taxpayer disagrees.

The NHS may be mostly a good thing, but as a simple matter of logic there are going to be some people who are sometimes worse off because of its existence than they would in (say) a completely private system.

Having said all that, while I've complained in other threads about my inability to get appointments for myself, for most of the last few decades, when we had a serious issue with DS, we had GPs willing to come to our house at the drop of a hat, including within 15 minutes of me calling, on the last occasion. It may have helped that hospital team had previously written to them to keep them informed and ask them to support. I wonder if your specialists should have done the same.

GoodnessKnows Sat 08-Mar-14 12:23:39

Poubella, that's just so shit. Are you on any of the helpful MN groups here, too?

I was in a total vacuum of mental and emotional hell before diagnosis (8.5 weeks). I'm not so worried about myself now as, as I've explained, I'm assertive, resourceful and intelligent enough to have gone (in desperation) to a Cancer charity who have been wonderful and are offering me counselling. My concern is about other people who are IN or going to go through that period of desperate anxiety and I exaggerate not hell. There is no one to support people WITHOUT a diagnosis and who are in that stage of knowing things are bad but waiting for the op and to find out whether they'll walk again, have two bags, live, have cancer, etc.

Wish I could or someone could point those people in the direction of real help for those at that stage.

foodie92 Sat 08-Mar-14 12:53:41

Whilst I don't doubt that there's clearly a need for the support aspect people are highlighting... as someone who struggles to get Dr appointments to fit in around things on the rare occasion I do need one... I'm not sure I want my GP to have to find time to call up and provide emotional support to patients who've just been diagnosed. I want him or her to concentrate on giving out the best value he or she can in their role; and that's not being a shoulder to cry on when people have devastating news or a very serious medical condition.

It's a "nice to have" (a very very nice to have) but should not distract them from more core duties.

I wouldn't expect a call or input from my GP in most of the situations described (exceptions being how to manage pain medication/etc of course).

Sorry, i guess this post isn't going to be popular. But limited resources and all that.

ProlificPenguin Sat 08-Mar-14 13:47:14

OP you have been through a rough time of it, it sounds like you are coping well and hopefully things will get easier.

Did you call the surgery to arrange the daily visits? When I had surgery and needed home visits for dressing changes I had to call to arrange, when I was more mobile I got a taxi to the surgery for appointments (that I made ).

Are you regularly changing the dressings currently? If you are doing it yourself make sure you use a saline wash, if you are in the 6 week period then call surgery for appointment?

Re your GP, ring on Monday and make an appointment. Ask for a home visit if immobile, if not get a taxi to the surgery. Sitting at home wanting him to get in touch isn't helping you. GP's don't make appointments with their patients.

MiscellaneousAssortment Sat 08-Mar-14 14:43:25

I think people are hearing your request for more emotional support louder than your other requests, like pain and drug management, dressings changed... Basic medical needs.

I'm not surprised you are feeling deserted and vulnerable, or have concerns for others.

I would complain about the practical care aspects the practice failed to deliver, and the lack of communication.

There is a tension between government policy, putting gps more and more at the heart of patient care, stripping the power of consultants in the process... And the actual capability of gps, which is to do less and less, and certainly not be the coordinating force in patients care.

It's disgusting that people have to suffer because of this unresolved tension leaving a massive gap in our healthcare.

Kundry Sat 08-Mar-14 14:57:32

Wound dressings should have been done by the District Nurses if you are immobile - it's the responsibility of the hospital to organize this before you are discharged. The District Nurses don't actually work for your GP at all, the letter to the GP isn't to get your GP to organize it but to let him know what's happened in hospital (and what they have organized for follow up). I think this is where it all went wrong for you as the District Nurses would have picked up on your pain control, liaised with your GP for you and generally been a source of support - without them being organized you've fallen through the gaps.

GPs are limited to 10 minute appointments and while they want to be supportive, if they had someone who wanted to make them every week just to talk, they would be referring you to counselling to do this. The main resource for handholding and support is usually a cancer specialist nurse and I hope you have one now.

VodkaJelly Sat 08-Mar-14 15:08:22

My friend went through something similar. She had major surgery for a cancerous growth and was in ICU for days afterwards. She was then discharged from hospitial into her doctors care.

She was a single mum with 2 kids and despite being bedridden, unable to walk, dress herself or go to the toilet she was left alone. It was her friends and children that got her through it.

Her sister (who lived 100's of miles away) was visiting her and phoned the doctors and gave them the riot act. Turned out that she should have had daily nurse visits, visits from the pain management team, doctor visits, MacMillan nurses, home help etc but "her notes were just filed" so nothing was put in place.

After bollocking the doctors everything was then put in place and her life was made easier and bearable.

But it should never have happened. Sorry it has happened to you to OP.

Bassetfeet Sat 08-Mar-14 15:18:00

I am so sorry for the ordeal you have been through OP. No wonder you are vulnerable and emotionally raw.
The main failing in my opinion is the failure of a district nurse visit to your home post discharge to assess your wound and well being. They are a intermediary contact with the GP and could have liaised re your medication reduction. Also supported you in getting counselling. Counselling is a priority for you .

So there has been a breakdown in communication somewhere re your home assessment by community care team I think. Could be hospital at fault for not organising this on discharge . Somehow the district nurse team have not been given your details . I would investigate this if you feel strong enough. How is your wound now?
Take care .

hanloumac Sat 08-Mar-14 15:30:04

I went undiagnosed by my gp for nearly 12 months, it has resulted in a longer length of treatment nearly two years, culminating in a bone marrow transplant! My head GP seems to be acting in damage limitation so offer a lot of support, but they are there to provide medical support not emotional. I have followed your story and from the beginning you've seemed intent on receiving emotional support, expecting help from Macmillan. I can say in two years I've never been approached with the offer of emotional support from Macmillan. I did have a good contact nurse and have had odd chats with her but it wasn't a general emotional support but more guidance through stages & help in remaining hopeful. I do think you are expecting a little more than is possibly provided by the nhs, approach charities that is why they exist as the support isn't there already!

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