Is the support offered by GPs in the British NHS acceptable or are there aspects that need better training and education on liver conditions

[Iro1]

Today I saw a GP, it was not my GP, my GP is on long term sickness leave.

Yesterday I tried to see a GP but failed as I was allocated a 'nurse practitioner' for the third consecutive time in the last 10 weeks. I insisted on seeing a GP.

What I am going to describe are my views and opinions on how the NHS operates, I am well aware that the NHS is under considerable pressure at the moment and that some people may feel I am expecting too much, if you do feel that way, feel free to give me both barrels in the replies.

It is also true that my own personal conduct in attempting to kill myself twice has imposed an unnecessary cost on the system.

In the last ten weeks I have been suffering symptoms, pains in my leg, pain in the right abdomen and upper abdomen. Also terrible sinusitis, although this is probably not liver related I also had bad sinusitis when the first investigations into my liver took place.

After speaking to the Deputy Practice Manager she arranged for me to see a GP today in the morning, she also made a point of making an appointment with a GP who happens to be a partner of the GP practice.

One of the problems with seeing the 'nurse practitioner' is that they did not seem to have a broad enough understanding of the health issues I faced.

The first thing that the GP partner said to me when I was in his office was that I needed to get used to seeing 'nurse practitioners' in the future as the NHS did not have the resources to provide enough GPs. In fact he said I would have to be very fortunate to ever see a GP again. This was very honest of him, clearly members of the NHS are adopting the view that it is no longer a universal, comprehensive healthcare system free at the point of delivery.

It is like the UK has become an undeveloped country with a health infrastructure based on nurses not doctors without it being publicised.

Is it time that the UK moved to a hybrid health system like France and Germany?

We discussed my ailments which included an ALK score of 162 which had been flagged up in my bloods but which no doctor had informed me about. I came across the score on my results and googled it to find out what it meant. Anyone familiar with my posts will know that when I google bad things happen!

The GP felt that it was likely connected to my recent gallbladder issues not my liver as my previous score had been a 130.

I also pointed out that in my original presentation of lethargy and fatigue my GP had relied upon LFTs to determine if I had fibrosis. I presented with obesity, big belly classic NAFLD indicators:

Offer testing for advanced liver fibrosis to people with NAFLD.

Do not use routine liver blood tests to assess for advanced liver fibrosis in people with NAFLD.

Consider using the enhanced liver fibrosis (ELF) test in people who have been diagnosed with NAFLD to test for advanced liver fibrosis.

All the above from NICE, unfortunately my GP just kept using standard LFTs and it took him almost a year to arrange an ELF test. My score came back at 10.5 which technically is not advanced fibrosis but still prompted action on his part .

If I had an earlier ELF test then I could have focused myself on the issues underlying NAFLD.

Could greater efforts be taken to educate GPs about suspected NAFLD and the actions required of GPs in particular the appropriate tests when these GPs see patients who fit the profile?

I then asked if the symptoms I was experiencing where the first signs of de-compensated cirrhosis. Like a lot of other on here I wake up every morning with a fear that the 'next stage' of my liver has started.

I check the colour of my pee and my stools as well as look for any signs of jaundice every day.

I also asked if I actually has cirrhosis, he looked at the records and said I did have cirrhosis. No liver specialist I have seen has ever said I have cirrhosis, the only time that I was told I had cirrhosis was by the doctor in the Mental institution I was sent to after being sectioned. I could find no providence of this claim until today, apparently there is a medical section within UK health authorities called 'Summary'. They send out letters in response to enquiries from other medical doctors or institutions. Presumably 'Summary' had responded to an enquiry from the mental hospital I was then in.

Summary do not contact you to copy you into the information they simply supplied a one line response 'this patient has cirrhosis'.

If I had been diagnosed with cirrhosis then I should be receiving 6 month scans and monitoring. A note was then discovered after a subsequent improved fibroscan saying I did not need to go back for three years.

Not going back for 3 years being a diagnosis of NAFLD with fibrosis without cirrhosis.

Tomorrow I will try to speak to the Hepatology Department to clear all this up, that is if I can get through, the GP I saw today did not feel willing to chase the matter up, telling me it was my problem to sort out. In fact he suggested I find a new GP practice to register with as he felt the relationship between myself and his practice had broken down irretrievably.

Can a patient have cirrhosis one moment and then not have it the next?

I thought cirrhosis was a one way street?

Clearly in my experience there seems to be an opacity in the whole diagnostic process as well as in the communication of information to the patient.

Perhaps the Hepatology Department where too intimidated by my previous record of extreme reactions to medical results diagnosis?

Perhaps they used the term 'advanced fibrosis' as an euphemism for cirrhosis?

The net result of today's GP visit was that new blood tests where arranged and in fact have been taken today. I received a new treatment for my sinusitis that the 'nurse practitioner was apparently unaware of and I left with a flea in my ear, being told that I had 45 minutes of a GP's time which the partner felt was unfair to other patients.

My view on that was that had I had an ELF test the very first time I had gone to my doctor with symptoms displaying classic NAFLD body shape, then I could have started changes to my diet, consumption of alcohol etc. at that point

In fact my GP reassured me that I could still drink in moderation and that I was just a big chap, after I had my ELF test I have not touched a drop of alcohol, which is pure poison for the liver.

It would also most likely have avoided my extreme reaction of attempted suicide and all the costs associated with those attempts (yes there were two) .

The appointment that my GP arranged after my ELF test was made mistakenly with a surgeon, not the Hepatology Department. That added months of worry since an appointment with an individual surgeon is difficult to arrange and the date was months ahead.

Months of dread and worry and googling and catastatrophising and in my case planning how to take my own life

An appointment with the Hepatology Department is somewhat easier to make as there are a number of doctors you can see and there are weekly clinics you can go along to (this was all pre covid).

NICE guidelines are there for a reason, my advice to anyone with any condition, when you see your GP and/or Liver specialist is to ask them:

Are you following NICE guidelines with my treatment?

If I had asked this question the first time I presented with symptoms my GP would have been obliged to check what NICE guidelines are and act on them.

'Consider using the enhanced liver fibrosis (ELF) test in people who have been diagnosed with NAFLD to test for advanced liver fibrosis.'

I would like to change the wording to :

'Always use the .....'

Is there any way the British Liver Trust can put pressure on NICE to make this change in the wording?

The ELF test based upon a simple algorithm of other enzyme scores must be a relatively cheap test compared to fibroscan etc.

Part of me thinks that the reason the language is 'consider' not 'always ' is because of the contingent resource implications of wide spread ELF testing. An enormous number of individuals are likely to present with high ELFs.

The cut off point of 10.5 is already high I believe because of the resource implications of having it lower. A clinical view seems to suggest a cut off of 9.8.

I will be putting all of these issues in writing to the Practice Manager and requesting the allocation of a new GP, even if it is unlikely that I will ever see them.

Can a GP practice chuck you out because you are problematic?

I will let you know.

Over to you all, sorry for rambling and for focusing on the UK, and being self obsessed but perhaps there are aspects of my experience that will help you get more from NHS treatment and remind your GP that good bedside manner and 'bonhomie' are all fine and good but they do not replace ensuring treatment follows fundamental NICE guidelines. .

It would be interesting to hear others experiences,

regards

Iro1

[gertrudestein]

Hello Iro1

You obviously have had many health issues going on over the years and many battles.

I, on the other hand, reached the ripe old age of 72 before anything serious happened - a diagnosis of autoimmune hepatitis which led to 6 days in hospital and ongoing medication which, I'm happy to say, has worked, so that I now lead a fairly normal life. Hence my presence on this forum which answered all my queries in the early days. But before that, I was also trying to support my son who had become an alcoholic and went through all the dramas associated with that condition. He died in 2019 from an accidental overdose of drugs while trying to find relief from his insomnia, anxiety and panic attacks.

So I can empathise with many of the posters on here who are themselves, or are the carers of, people who have alcohol related illness. But I was interested in your point about how the NHS compares with France or Germany. I now live in France and have had all my AIH treatment in the French medical system. It has been excellent. You will say, ah yes, but how much did it cost?

Straight away, my doctor put me in the ALD system (affective longue durée which means long term illness) and almost all my treatment was then free. I had to pay £20 a day for my stay in hospital but since I had three wonderful meals a day plus all my laundry etc. I considered it a bargain.

I have a free ultrasound and blood tests every six months. I do have to pay about £20 each time for my doctor's consultation but since he gives me his full attention for 15-20 minutes with no sense of being rushed and no delay in getting an appointment, again, I am happy with that.

Last time I visited him, my husband came with me as he was suffering quite badly with his hip which he had been told years ago he would have to have replaced at some point. So, doctor's appointment 3.12 2021, consultant's appointment 14.12.2021, operation will take place next Tuesday 25. January. How does that compare with waiting lists in UK?

Because we are on a low income (just our UK pensions) most of his treatment will be free, too. Anyone who works in France has to have a mutuelle (medical insurance) to pick up costs of treatment but most mutuelles are part of the salary package a bit like National Insurance in UK.

Something is going to have to be done with the NHS as all my relatives and friends in UK are confirming your story of poor treatment (can't get to see their GP), waiting a long time for results (I get a verbal and written report from the ultrasound doctor and a copy of the film before I leave the premises, ditto for my two yearly mammogram) but kudos to the transplant teams who have looked after Danny and many others who have had transplants.

[Iro1 in reply to gertrudestein]

Hi

Thank you for your reply, when I posted I thought that I risked creating the perception that somehow I did not appreciate the NHS. I received excellent care for the abscess on my liver and gall bladder. I am a huge fan of the NHS and its staff but believe that we all have a duty to ensure it improves the standard of care to the greatest extent.

It is rather the inconsistency of care particularly at GP level that concerns me. If I had had a different GP I am certain that he would have arranged an ELF test the first time I presented. So obvious were my physical signs of being at risk of NAFLD.

The GP I had, who I believed qualified abroad, seemed unaware of the NICE guidelines and I was clueless about them at the time, my liver was not even mentioned in the discussion. I can understand quite well that if a GP trains in Africa they are not likely to come across that many people with the risk of NAFLD. NAFLD being a disease of the more elderly and affluent.

This is why NICE issues guidelines, to provide a template for best practice as well as to preserve resources from being wasted. My GP sent me on 5 separate visits for the standard Liver Function Tests despite the NICE guidance being that LFT tests should not be used for detecting NAFLD. Then my GP finally sent me for an ELF test.

In addition his booking of an appointment with a surgeon rather than an hepatology Department indicated some profound confusion about the structure of the NHS.

No doubt my GP thought he was acting in my best interests at the time but if I had just said to him at my first consultation 'Are you following NICE guidelines in my treatment please?' so many resources would have been saved!

This should be your question to any NHS professional providing you with treatment

'Are you following NICE guidelines? If not why not, what are your reasons for not following NICE guidelines?' IMHO

God bless the NHS!

Iro1

[deanw41]

Hopeless, it’s an outdated service. Gone are the days of the family Dr, building rapport ,trust. Different Drs if you can actually get through. No continuity of care. Healthcare needs reforming.

[Iro1 in reply to deanw41]

HiI agree with you, I was particularly concerned to be told by the doctor that our relationship had irretrievably broken down because I had simply questioned the treatment I had received!

Iro1

[Hidden]

Thank you for sharing the post. The British Liver Trust do work with the Royal College of GP's to educate and inform best practice, although we do recognise there is an ongoing need to improve services.

If you wanted to raise a concern regarding primary care (GP's) NHS England is the organisation to contact, here is a link;

england.nhs.uk/contact-us/c...

This is taken from Citizens Advice citizensadvice.org.uk/healt...

[Iro1 in reply to Hidden]

Hi,Thank you for your response, I am in the process of drafting a complaint against my local GP practice and asking to be allocated to a new GP.

I really have an issue with one of the Partner GPs taking time out of a consultation to suggest that I needed to find a new practice because our relationship had broken down irrevocably.

Presumably this approach would allow a GP practice to dump all the 'difficult' patients (I am a difficult patient! mainly because of the poor standard of my first appointment).

The practice would be left with all the 'easy' patients, which I am sure would suit them.

Is there anyway I can address the bringing up of this issue in a consultation?

Surely it would have been better dealt with by a letter or by a phone call from the Practice Manager as a separate issue?

Which body has oversight of the governance of GP practices please?

Iro1

[Hidden in reply to Iro1]

NHS England is responsible for a GP’s contract and making sure that GPs carry out the terms of their contracts.

Each individual healthcare professional that looks after you must provide a good standard of care. This is a legal duty and it's also required by the regulatory body of the professional. In the case of a doctor, this is the General Medical Council

gmc-uk.org/

[DavyGravy]

Hi Iro

This is only my own perspective and experience.

I cannot recall the last time I saw my GP. It does not worry me, I'm sure having me sat in front of him will not make his analysis of my result any different

I mainly communicate using my surgery web site (as it saves a 40 minute wait on the phone), either my GP will message me or the surgery manager calls me. My GP has made all results available to me by print if I want them, but I have zero interest in feeding my anxiety over some numbers. Plus I want to be happy and enjoy my day rather than frantically worry over the little things..

I have a contact number for my liver team and can call to leave a message 24/7 and they call me back asap. That is wonderful service.

I do know my kPa it is higher than yours and I'm still a million miles away from anything like cirrhosis.

If you or I had cirrhosis, trust me, we'd know it... if you think we feel poorly now, Cirrhosis is

hell and we do not want to go there.

There is a shortfall in doctors in the uk, doctors have more patients, people are living longer and new people are coming to live here every day. I do not see huge amounts of money poured into the NHS to cover more staff and the incredibly expensive equipment needed.

As for Nurse Practitioners, they are an intermediate between a nurse and a doctor and often trained in a particular problem, (such as liver nurses). This is a great way to speed up the process of getting people treated and usually they have a lot of experience before becoming a nurse practitioner. I remember when I worked in a hospital and nurse practitioners were just starting out, in A+E, only doctors could request x-rays, some of the NP's had worked in A+E for 20+ years and would know when someone needed an x-ray, as soon as they were given that privilege, the waiting times went down dramatically, so I'm totally in favour of NP's.

When I was very young, my local surgery had 8 doctors and whole families were assigned to just one doctor... in one way it was good, but at the same time, I used to go into the room and my lovely old doctor would be sat behind a haze of cigarette smoke and a bottle of Grants on his desk. I do not miss that

When I worked at a hospital I mentioned to one of the doctors in A+E about my gall bladder problem and how I needed to get it sorted out.... he replied, there is no magic wand to make you slimmer, healthier and cured, if you are not prepared to take your own health serious and eat healthy and lose a lot of weight, why should your doctor?

He was not saying my doctor would not take my health issues seriously but he was saying, I cannot sit back doing nothing then complain others are not doing it for me.

Could the NHS be better? yes absolutely, but how? personally I think greater investment and more specialty nurses. My daughter works for a private diagnostic imaging company, I'm happy that she makes a huge salary, but I'm sad that it is often at the expense of the tax payers when her company is used to try to clear the waiting lists for ct/ mri because of the huge number of patients needing/ wanting/ demanding them. That takes money out of the NHS budget

Finally...

The best thing in the world is a strong mind and an open mind... I say open mind because, when we fixate on one thing, such as cirrhosis... we could have kidney stones or IBS or many other things that we immediately dismiss, because in our mind everything (and anything) that happens or we think that happens or we google will just be cirrhosis or will be ignored and ultimately we may end up very ill because we refuse to accept any other possiblility.

I'm glad you are doing so well, those of us who have suffered mental health issues often fail to see how serious it can be but the fact that you have shared yours is wonderful, you are addressing it, and opening up dialogue for others to speak up. Your story is hope for others and also a warning to get the help needed.

all the best

Dave

[LindaC]

Thank you for your account of your experiences, dreadful experiences, rather commonplace in these strange times. I'm saddened to hear that there is so much of this going on. My issue is hypothyroidism [+ CFS] and where similar quagmires exist.

As for liver... I insisted and almost a year got something kind of pointing to NAFLD but I seem to have turned that round... yeah, who can tell!? We can, all of us, only do the best we can for ourselves... with fingers and everything else crossed that we MAY get something helpful from medicine. When it's good it can be great - when awful it's atrocious.

Look after yourself and best wishes to you.

[Hidden]

I can honestly say my GP practice is great, I just ask for my doctor who I’ve seen for years & was my dads before he passed away and is also my granny’s, mums sisters ect if for any reason he isn’t available to see or speak to me and I see another doctor and he talks to them before hand, and also talks to my consultant at hospital, I can see how frustrating it must be for people who are not getting a service like this though

[Iro1 in reply to Hidden]

HiGlad to hear that you are being looked after I did not want to criticise all GPs but raise the issue of knowledge of NICE guidelines and the ELF test.

Iro1

[LindaC in reply to Iro1]

Exactly! I've had some shocking experiences and some good [life saving emergency ones] and there is no ALL of anything. Best to you. 👍

[4567tel]

I can honestly say that after two bouts of hospitalisation with covid one with collapsed kidneys and now with terminal cirrhosis my experience of the NHS has been wonderful I am now in palliative care my doctors have been brilliant the nurse’s who have looked after me were so kind and caring no sorry folks but I think we are so so lucky to have the NHS think about the health care system in the USA nocash no treatments