GP refusing to send me to private investigations

[Wobblyheart]

I want to preface this with saying that my GP practice is really amazing compared to what I have experienced before, on time, understanding, caring, accommodating. They have ordered a significant number of investigations for me already, but not being able to find anything abnormal. So I do understand why they are doing it but I feel so incredibly frustrated.

Long story short, I have been suffering with relentless fatigue (nothing like any thing i have experienced before) for 2 years, my muscles hurt and burn on a minimal exertion and out of breath from minimal activity. I have a bloated stomach all the time, and some digestive issues. Recently I discovered a really large - maybe 10 cm or so - sausage shaped lump in my right side. GP could feel it too on the examination. Suggested it could be my ascending colon. However, my worry is that the lump is ALWAYS there, irrespective of bowel movements or anything else. After 3 FIT tests and normal bloods, GP refused to refer me for a private scan. I understand and dont want to be a burden for NHS anymore but why refuse to send me privately?

I do suffer from health anxiety and the rationing is that it will not help me. However, without knowing what this lump is, my anxiety meds (a high dose) doesnt do anything for me, without knowing i wont be able to try for another pregnancy (and I am 38 already). I understnad why having another scan might make anxiety worth but i feel like denying it to me just resorts me to a half-living in a state of tourteous uncertainty. If i did not a physical lump and this 2 year exhaustion, I would find it much easier to move one, but this is not the case here. I know that no amount of CBT, drugs etc wont be able to help me whilst I feel utterly drained of energy for no obvious reason and feeling the "swelling/lump" in my abdomen.

I hate this situation so much. Because I totally understand where the GP is coming from but it is not going to be helpful for me. I hear people and some people say this to me too: "advocate for yourself". I'd like them to try and be a young woman with health anxiety and real physical symptoms and try to advocate for themselves. I am burnt out. Scared. and so so so so tired.

OP I think the issue is you want a 2 week pathway however, GP feels a routine referral is indicated.

I would get the NHS referral reinstated. Can you choose and book? You maybe able to be seen in another area much quicker under the NHS. If you are willing to travel. You can also ring and explain you are anxious and ask to be put on a cancellation short notice list too.

My 26 year old son has been exhausted for the past 3-4 years, loads of tests from doctors through previous PMI but all came back clear - the diagnosis was Long Covid or Chronic Fatigue or Post VIral Syndrome with the advice of 'learn to live with it as we can't do anything'. His symptoms sounded exactly like yours except for the sausage shaped lump. Over the past 8 weeks, he's had 5 sessions of acupuncture and taken twice daily a prescribed herb mix in hot water (from a fully trained GP who moved into Eastern medicine) and cannot believe how much better he feels. He still gets tired easily, still has aching legs but way less than before and now feels like he can be optimistic about living his life as a young man should be able to.
Would this be something you would consider?

In that case if they wrote a private referral the Op could get seen quickly though? I don't see the problem with writing the referral.

Do you not think the Op should get checked out what is causing the problem before recommending something like this??

Oh 100% and absolutely, but I need to find out what this lump is first.

It's okay, it was in a way helpful too. I am much hoping that I do not have malignancy as I have a 2 year old so would like to still have hope that I will be okay.

GPs and the NHS don't refer for private anything.
If you want it- you arrange and pay for it.

Then I am even more flabbergasted, why wouldnt they say it directly to me?

Because if its not clinically indicated radiology will reject the request.

NHS and private two different systems. Simples.

Say what?
That you dont need any further tests?

My NHS GP is happy to refer me for private tests and consultants? Maybe it varies. They just do it ASAP and email it over to me.

You cant have a scan just because you want one- not on the NHS anyway.

There has to be a clinically justified reason- otherwise radiology bounces it straight back and says nope.

You don't happen to have benenden do you OP? they have started recently taking referrals from a clinician such as a nurse practictioner

You will have arranged your own appointment initially- letter from GP is a courtesy.
NHS staff DO NOT book/arrange/refer for private anything. Thats down to the patient.

I have known patients pay 1k for initial private Consultation and tests and then the private Consultant has added them to their NHS list however, it is rare and only if clinically indicated and they have to justify their clinical decision to do this.

It is seen as queue jumping in some circles so it is frowned upon.

If surgery is indicated and it is not cancerous or urgent you could be looking at a 20k hospital bill going private too.

After the tests you may end up back on the NHS pathway and waiting but at least you will know it is routine (hopefully).

My DH had to wait over two years for surgery to an incisional hernia. Our neighbours abroad couldn’t believe it. They are seen and operated on in their country within 4 weeks! This is why we are moving there as soon as our DC are settled!

No, that they don't refer for private scans. I said "These are my symptoms, could I please be referred to a private MRI scan". Why not say "we do not refer for private scans, you have to go through a private hospital for that" if they do not do that at all?

You will always be required to have a 'consultation' first which will effectively be an appt with a private doc to determine whether the scan/test you want is actually medically appropriate

A gp cannot request a Ct or mri scan….only a consultant…..a gp can refer to a speciality such as gastro however will follow nice guidance as to whether it’s an urgent or routine referral…..the speciality service will then make decisions around appropriate investigations

this should read…..an nhs gp…… however a priavte gp can , after a consultation, refer a patient on for a private scan

Have you read my first sentence? Thanks for repeating what I initially said!

Also this is changing. I can arrange a private MRI scan in minutes near me without seeing anyone before booking the scan! The medical world is changing.

It doesn’t even need to be medically appropriate as such…..my DD just told the private gp she had health anxiety around her symptoms….the nature of the consultation was to get a medical history to ensure that any scan would not be detrimental or unsafe

GPs can absolutely request MRIs/CT scans.

I dont.... I have so many pre-existing conciditions that I always thought it wouldnt be a good investment but maybe I should look into it a bit more

The negative predictive value of a FIT test is >99%

No - the correct pathway is that the private gastro consultant writes to the NHS for scan.

No need to involve the GP and anyone doing this or saying ‘the service isn’t set up’ is a lazy half arse, who needs to speak to their service manager.