For the last 2yrs I have been kept going in circles by the NHS, I've seen 4 consultants, been passed through 3 different districts and all of them have said the same thing... I need surgery.

I have a problem that needs correcting, but there is another problem getting in the way of them being able to do that surgery.

They CANNOT carry out the needed procedure until the secondary issue is resolved... I have been repeatedly fobbed off and passed around without anyone taking responsibility for it.

Then after almost 2yrs it got bumped back to my doctors to apply for funding for the secondary procedure. That has now been refused.

To put it as bluntly as possible... I am barely hanging on by a thread here...I have zero chance of a normal life ever again... and it's not an overly complicated or expensive procedure.

My doctors have letters from all of these consultants spelling out what needs doing, and the effect it is having on my mental health... I have asked for copies of all letters sent/received regarding this funding and have nothing.

This was my last hope... and they're saying my life isn't worth anything, that I don't deserve any possibility of a normal life... let alone a fulfilling one.

I don't know where to turn.... I have no one, and no idea what to do... I'm scared of what may happen to me.

Have you thought about going private?

I feel for you.

I have suffered this approach from the NHS myself.

In my case I made enough noise to be eventually successful.

One thing that got me to have an MRI and a consultant appointment in 48 hours was that in a complaint I mentioned something along these lines:

"I perfectly understand that the NHS works closely with the pharmaceutical industry and curing me would result in a loss for them as I wouldn't be taking any medications.

As you know, I am now in a position whereby it is suggested that I should take medications for life, when in fact this seems unnecessary and extreme, but it is a guaranteed income for the pharmaceutical industry.

A simple procedure is very likely to resolve my condition, so why is every NHS doctor suggesting that I should take medications for life?

Is the NHS tied into a contract with the pharmaceutical industry to prescribe a minimum number of medications every year?

Are the directors of the NHS earning commissions or bonuses based on how many people are on permanent medications?"

It was possibly a coincidence, but to date I've never heard of anyone going through the process I went in only 48 hours.

One important thing, don't make allegations, ask questions.

They don't like people sticking their nose in their affairs, so they avoid answering and get you done and dusted without joining any queue.

In my experience...

Have you thought about going private?

If going private was an option, I'd happily take it.. But I'm partially disabled and simply don't have the means to even consider it.

I can appeal apparently... because the reasoning they're using to deny it doesn't factor in some very simple things... like the impact it's having on my mental health and the fact that it's partly due to a side effect of surgery I had a few years ago that makes my life unbearable and impossible to do certain physical things... Things that could be resolved with surgery. But if as I expect... they refuse the appeal... I need to know what avenues I can pursue. I cannot go on living like this when it could be resolved and they're simply trying to deny it based on saving money... Yet the longer term effect of this is far costlier to the NHS.

Sorry to hear of your predicament.

I'm afraid I'm not clear what the problem is.

You need to have two procedures carried out, one more serious than the other, but the more serious procedure is dependent on the other one being done first? Over two years you've seen four different consultants who have confirmed this. They have now referred this back to your doctors (do you mean GP?) but you are being told that you cannot have the first procedure. Don't quite get this as in my experience (25 years in the NHS) I would expect the consultants to be deciding about this, not your GP. That's why your GP refers you to a specialist.

Who has told you that you can't have the first procedure and what reason did they give for this? Are there medical reasons or has your local Care Commissioning Group simply decided not to fund this procedure? You need to get your GP to explain clearly what the problem is and whether you have any other options. You haven't provided enough detail for me to understand what is happening.

I'm not sure you'll get anywhere with suing the NHS, unless you can establish some sort of medical negligence or unlawful discrimination. Even then I don't think you will get anywhere - sorry.

Some firms of solicitors will offer 30 mins free legal advice - but I wouldn't hold out much hope.

I would not follow King's advice.

there are many simple procedures surgeons wont carry out if the patient is obese or has a heart condition because they wont survive the anaesthetic. Is yours a similar scenario? If so you wont win a court case and anyways you cant force a surgeon to do harm and that is all they will say to defeat such a court claim.

Also no such thing as partially disabled, there are varying degrees of disability but you arent part dead either, you are alive or dead.

Sorry to hear of your predicament.

 

I'm afraid I'm not clear what the problem is.

 

You need to have two procedures carried out, one more serious than the other, but the more serious procedure is dependent on the other one being done first? Over two years you've seen four different consultants who have confirmed this. They have now referred this back to your doctors (do you mean GP?) but you are being told that you cannot have the first procedure. Don't quite get this as in my experience (25 years in the NHS) I would expect the consultants to be deciding about this, not your GP. That's why your GP refers you to a specialist.

 

Who has told you that you can't have the first procedure and what reason did they give for this? Are there medical reasons or has your local Care Commissioning Group simply decided not to fund this procedure? You need to get your GP to explain clearly what the problem is and whether you have any other options. You haven't provided enough detail for me to understand what is happening.

 

I'm not sure you'll get anywhere with suing the NHS, unless you can establish some sort of medical negligence or unlawful discrimination. Even then I don't think you will get anywhere - sorry.

 

Some firms of solicitors will offer 30 mins free legal advice - but I wouldn't hold out much hope.

 

I would not follow King's advice.

I don't want to get into specifics regarding the procedures on a public forum.... So I'll try to explain as best I can.

I have a specific medical issue that is causing me significant physical problems as well as the severe mental ones, In terms of Maslows heirachy of basic needs... It leaves me unable to get out of the bottom rung. I was referred to a specialist who then passed to another in a different area... who then confirmed that I may need surgery to correct the problem... But there is a secondary issue getting in the way of that... and until that issue is resolved he cannot do anything about the other. This secondary issue (Which is being looked at as a 'cosmetic one, even though it's stopping an essential medical one being done) isn't something he can deal with, so I was originally referred to the correct consultant in the same area... who said they wouldn't get funding because I am not living in that area. So I was referred back to a similar consultant in my area who said it's not something he can do because they don't have the right facilities for such an operation (after care and all that, they're more of a minor cosmetics place)... So he then referred me back to my GP to apply for funding for this procedure.

They immediately denied the funding... and their reasoning for doing so is based upon information that makes no sense, disregards ALL of the 3 consultants recommendations and lays out some demands to qualify for it that are literally impossible for me to meet. The least of which is a demand that I meet a specific BMI criteria that is some 8-10kg below what everyone (surgeons, dieticians) say my idea weight range should be, however... because I have lost in excess of 75kg, according to the surgeon and dieticians, I have been left with between 20-25kg of excess skin hanging around... So that added to the weight range I have been told is my 'IDEAL' weight... I am anywhere between 30-35kg above what they claim I need to be... and am only between 5-12kg (depending on which figures you use) away from meeting that target set by the surgeon and dieticians who have treated me for the last 3yrs. I have lost some 80% or more of my excess weight and it is physically impossible for me to lose 'skin'.

I am not asking for all of this excess skin to be removed, I am asking that they remove only that which is causing me physical impairment and pain and denying me the ability to lead/live a normal life... I am asking that they listen to the recommendations of the consultants instead of looking at a spreadsheet and simply refusing it based on the inaccurate guidelines they stick to and not use impossible to achieve restrictions to justify it.

I am quite litterally living on a knife edge here... This has been on going now for 2yrs and I've been passed around from consultant to consultant, each one saying I need this.. and then passing it off to some one else. No one is willing to take any responsibility for it and are simply denying me any chance of having a normal life... They are effectively telling me that my life is worthless and I am not worthy of being allowed to live a normal one.

I have put all of this into a letter to appeal the decision... but I fully expect them to refuse the appeal because that's what they do... they don't care about the people their decisions impact, they only care about blindly following some rules that make it impossible for people to get the help they need... they have made me feel that my life is no longer worth living if it has to be lived like this... because this isn't life... it's torture.

I don't want to get into specifics regarding the procedures on a public forum.... So I'll try to explain as best I can.

 

 

I have a specific medical issue that is causing me significant physical problems as well as the severe mental ones, In terms of Maslows heirachy of basic needs... It leaves me unable to get out of the bottom rung. I was referred to a specialist who then passed to another in a different area... who then confirmed that I may need surgery to correct the problem... But there is a secondary issue getting in the way of that... and until that issue is resolved he cannot do anything about the other. This secondary issue (Which is being looked at as a 'cosmetic one, even though it's stopping an essential medical one being done) isn't something he can deal with, so I was originally referred to the correct consultant in the same area... who said they wouldn't get funding because I am not living in that area. So I was referred back to a similar consultant in my area who said it's not something he can do because they don't have the right facilities for such an operation (after care and all that, they're more of a minor cosmetics place)... So he then referred me back to my GP to apply for funding for this procedure.

 

They immediately denied the funding... and their reasoning for doing so is based upon information that makes no sense, disregards ALL of the 3 consultants recommendations and lays out some demands to qualify for it that are literally impossible for me to meet. The least of which is a demand that I meet a specific BMI criteria that is some 8-10kg below what everyone (surgeons, dieticians) say my idea weight range should be, however... because I have lost in excess of 75kg, according to the surgeon and dieticians, I have been left with between 20-25kg of excess skin hanging around... So that added to the weight range I have been told is my 'IDEAL' weight... I am anywhere between 30-35kg above what they claim I need to be... and am only between 5-12kg (depending on which figures you use) away from meeting that target set by the surgeon and dieticians who have treated me for the last 3yrs. I have lost some 80% or more of my excess weight and it is physically impossible for me to lose 'skin'.

 

I am not asking for all of this excess skin to be removed, I am asking that they remove only that which is causing me physical impairment and pain and denying me the ability to lead/live a normal life... I am asking that they listen to the recommendations of the consultants instead of looking at a spreadsheet and simply refusing it based on the inaccurate guidelines they stick to and not use impossible to achieve restrictions to justify it.

 

I am quite litterally living on a knife edge here... This has been on going now for 2yrs and I've been passed around from consultant to consultant, each one saying I need this.. and then passing it off to some one else. No one is willing to take any responsibility for it and are simply denying me any chance of having a normal life... They are effectively telling me that my life is worthless and I am not worthy of being allowed to live a normal one.

 

I have put all of this into a letter to appeal the decision... but I fully expect them to refuse the appeal because that's what they do... they don't care about the people their decisions impact, they only care about blindly following some rules that make it impossible for people to get the help they need... they have made me feel that my life is no longer worth living if it has to be lived like this... because this isn't life... it's torture.

OK. 'm trying to repy but y keyoa is playng up wil try oorro

Sorry. I'm trying t respod to you but this sie iscausin meyoadprlems and can't ey propyl. Was also timedout yesterday.

Get onto your loa NH Care Commissioning website - look for "You alth" an cinial theshls and thprocedure you eed.

Tal opnland fraklywith your GP about whher you meet te xcetional funn criteria foridepe unding st.

orry this rubbis -thesit won'tacet y input!

Sorry. There is omeng rng wih tssie. it won apt wt I'm tpng

Sorry. I'm trying t respod to you but this sie iscausin meyoadprlems and can't ey propyl. Was also timedout yesterday.

 

Get onto your loa NH Care Commissioning website - look for "You alth" an cinial theshls and thprocedure you eed.

 

Tal opnland fraklywith your GP about whher you meet te xcetional funn criteria foridepe unding st.

 

orry this rubbis -thesit won'tacet y input!

 

Sorry. There is omeng rng wih tssie. it won apt wt I'm tpng

Can somebody tell me what I'm doing wrong? Keyboard strikes are not being accepted. This seems ok though.

I think there was some maintenance being done yesterday, Manxman, I had problems too.

It might be worth retyping your other post if you can, I'm struggling to understand it unfortunately.

HB

Hi OP

Apologies for absence but couldn't log on properly.

First of all, I'm pretty certain you have no hope of suing the NHS in these circumstances.

From what you say it sounds as if your GP has already submitted an IFR (Individual Funding Request) to your local NHS CCG (Care Commissioning group) for a procedure that is not routinely funded, but the CCG has turned it down. You want to appeal against this decision.

If I were you (and you may already have done this) go to your local CCG website and look for something like "Your Health". Here's the relevant link to my local CCG:

https://www.norwichccg.nhs.uk/your-health

On the left of the screen you will see "Clinical Thresholds and IFRs". Get into that part of your CCG's website and it should(?) list what procedures it routinely funds and what it won't. You may need to search a bit as not all CCG sites are set out the same.

I note that my CCG does not routinely fund Cosmetic Skin Removal (although I note it does not specifically refer to excess skin removal following drastic weight reduction.

You should also find some guidance about IFRs. Unfortunately, it seems to me that they accept that certain non-funded procedures may have physical/mental/psychological implications for patients if they don't get done, but that these implications for you need to be worse than what is normal or average for someone else with your condition before an IFR will be granted. Do you follow me?

I can't find anything about appealing against an IFR refusal.

To be honest, if your GP has already done an IFR then they should have made as strong a case as possible, including the recommendations of your consultants.

I think the best you can do is get back to your GP and find out why the IFR was rejected. (I suspect because you don't meet the CCG's required criteria).

Try to persuade your GP to re-submit an IFR. (Whether this is possible or not, I don't know).

As a former NHS manager of over 20 years I don't normally approve of "cosmetic" operations unless there is a clear clinical need. Sounds as if you might have such a need.

Yes - it's bonkers that they won't fund a procedure short- term that might lead to longer-term savings in future years. But that's how NHS funding works

Actually I've just looked again and found Removal of Redundant Fat or Skin. It's not routinely funded.

https://www.knowledgeanglia.nhs.uk/kms/Norwich/Home/ClinicalThresholdsPolicy/OS/RemovalofRedundantFatorSkin.aspx

This may also be useful?

Norfolk and Waveney CCGs

Clinical Policy Development Group

Psychological exceptionality and cosmetic/aesthetic surgery

Position Statement

Introduction

Norfolk and Waveney CCGs aim to commit NHS resources where there is a clear need in terms of health symptoms. Proposed interventions should be effective in relieving symptoms and should be funded fairly for all patients with the same condition. Aesthetic (cosmetic) surgery is not routinely funded.

This statement regarding ‘psychological exceptionality’ and aesthetic surgery has been produced to make clear the position of Norfolk and Waveney CCGs on the funding of aesthetic surgery when patients are suffering psychological distress due to their body image. This statement also aims to support primary and secondary care clinicians in managing the expectations of these patients and in sourcing the most appropriate care pathway for them.

An individual funding request (IFR) can be made for a treatment that is not routinely offered by the NHS when a patient is clearly different to other patients with the same condition or where a patient might benefit from the treatment in a different way to other patients. This is known as “clinical exceptionality”

Clinical Exceptionality

There can be no exhaustive description of the situations which are likely to come within the definition of exceptional clinical circumstances. The onus is on the clinician making the request to set out the grounds for clinical exceptionality clearly for the IFR Panel.

‘Exceptional’ in IFR terms means a person to whom the general rule should not apply.

This implies that there is likely to be something about their clinical situation which was not considered when formulating the general rule.

Very few patients have clinical circumstances which are genuinely exceptional.

To justify funding for treatment for a patient which is not available to other patients, and is not part of the established care pathway, the IFR Panel needs to be satisfied that the clinician has demonstrated that a patient’s individual clinical circumstances are clearly different from those of other patients, and that because of this difference, the general policies should not be applied.

Psychological exceptionality and aesthetic treatment

Patients experiencing psychological distress or social impairment as a result of their condition cannot be considered to be ‘clinically’ different from other patients with the same condition. Normal psychological and social experiences of illness, impairment or deformity may cause distress, but are not likely to render the patient ‘exceptional’ according to the definition used by NHS England. This is because the definition explicitly states that only clinical factors may be considered.

A diagnosed mental health condition may be considered to be a relevant clinical factor.

Patients experiencing psychological distress as a result of their condition will not normally be considered to be ‘significantly different clinically to the group of patients with the condition in question and at the same stage of progression of the condition’, unless they have a diagnosed mental health condition. Patients with a mental health condition will be considered according to the standard criteria stated above.

I think there was some maintenance being done yesterday, Manxman, I had problems too.

 

It might be worth retyping your other post if you can, I'm struggling to understand it unfortunately.

 

HB

Hi HB

I'm logging and doing a reply, but when I post the reply it tells me I don't have permission to reply and to refresh the screen and log in again. This has happened with both my posts today.

Am I doing something wrong?

Actually I've just looked again and found Removal of Redundant Fat or Skin. It's not routinely funded.

 

https://www.knowledgeanglia.nhs.uk/kms/Norwich/Home/ClinicalThresholdsPolicy/OS/RemovalofRedundantFatorSkin.aspx

 

This may also be useful?

 

Norfolk and Waveney CCGs

Clinical Policy Development Group

 

Psychological exceptionality and cosmetic/aesthetic surgery

Position Statement

Introduction

Norfolk and Waveney CCGs aim to commit NHS resources where there is a clear need in terms of health symptoms. Proposed interventions should be effective in relieving symptoms and should be funded fairly for all patients with the same condition. Aesthetic (cosmetic) surgery is not routinely funded.

This statement regarding ‘psychological exceptionality’ and aesthetic surgery has been produced to make clear the position of Norfolk and Waveney CCGs on the funding of aesthetic surgery when patients are suffering psychological distress due to their body image. This statement also aims to support primary and secondary care clinicians in managing the expectations of these patients and in sourcing the most appropriate care pathway for them.

An individual funding request (IFR) can be made for a treatment that is not routinely offered by the NHS when a patient is clearly different to other patients with the same condition or where a patient might benefit from the treatment in a different way to other patients. This is known as “clinical exceptionality”

Clinical Exceptionality

There can be no exhaustive description of the situations which are likely to come within the definition of exceptional clinical circumstances. The onus is on the clinician making the request to set out the grounds for clinical exceptionality clearly for the IFR Panel.

 

‘Exceptional’ in IFR terms means a person to whom the general rule should not apply.

 

This implies that there is likely to be something about their clinical situation which was not considered when formulating the general rule.

Very few patients have clinical circumstances which are genuinely exceptional.

 

To justify funding for treatment for a patient which is not available to other patients, and is not part of the established care pathway, the IFR Panel needs to be satisfied that the clinician has demonstrated that a patient’s individual clinical circumstances are clearly different from those of other patients, and that because of this difference, the general policies should not be applied.

 

 

 

Psychological exceptionality and aesthetic treatment

Patients experiencing psychological distress or social impairment as a result of their condition cannot be considered to be ‘clinically’ different from other patients with the same condition. Normal psychological and social experiences of illness, impairment or deformity may cause distress, but are not likely to render the patient ‘exceptional’ according to the definition used by NHS England. This is because the definition explicitly states that only clinical factors may be considered.

A diagnosed mental health condition may be considered to be a relevant clinical factor.

Patients experiencing psychological distress as a result of their condition will not normally be considered to be ‘significantly different clinically to the group of patients with the condition in question and at the same stage of progression of the condition’, unless they have a diagnosed mental health condition. Patients with a mental health condition will be considered according to the standard criteria stated above.

I had bariatric surgery in 2017 and was warned with the weight loss that their may be an excess of skin, removal of which is not funded by the NHS.

Hi HB

 

I'm logging and doing a reply, but when I post the reply it tells me I don't have permission to reply and to refresh the screen and log in again. This has happened with both my posts today.

 

Am I doing something wrong?

Probably not, it happens to me sometimes. You might like to post the problem in the Questions and Suggestions forum so people can help.

HB