I have some questions regarding getting help and surgery due to the very negative facial and bodily differences I have had because of a serious illness.
I suffered from severe toxicity which caused a loss of significant adipose tissue (fatty tissue) from my face and chest.
It also caused a recession of my jaws (maxilla and mandible), as well as significant hair loss.
I am wondering how I would go about seeking help from the NHS with surgical rectification.
I saw a cosmetic surgeon privately who advised a facial fat transfer could rectify a lot of the changes.
However, I can’t afford it privately, I am in debt over this illness anyway, as a lot of the tests and scans I had to pay for privately.
I am hoping someone may be able to help me with these questions I have:
What is the process for requesting the surgery be done on the NHS?
How do I evidence the psychological need in order to request for the surgery to be done on the NHS? Is a letter from a psychiatrist needed, or do I need to provide further evidence?
Is it possible that the NHS would pay for multiple things, e.g. fat transfer to face and to the chest?
Ideally, I would be looking for at least fat augmentation to my face and chest, but I’m feeling doubtful that they would pay for so much work given the dire funding at the moment. Is it possible?
My illness has been evidenced and the psychological effect on me has been dire (I’ve pretty much been agoraphobic and lost all my social life for the past 5 years since it has happened because of the huge impact on my confidence and identity that this has caused).
I would pay for it privately, but I lost all my savings (and even got into debt) just to get my illness proven and get a diagnosis, because my GP etc didn't believe me, so I had to go to private consultants on a trial and error basis to pay for the tests and scans.
If the NHS can’t help, are there any charities that might be able to help me to pay for some of the work?
Thanks in advance,
Sarah
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Sarah030609
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P.S. If a letter from a psychiatrist is needed, does anyone know of any good ones, i.e. ones that specialise in facial difference/facial deformity?
I saw one previously who was atrocious, she said I was making the whole thing up and had body dysmorphia. I showed her the clinical diagnosis and evidence of facial tissue loss from a qualified cosmetic and maxillo-facial surgeon, and she asked: "You've only seen him once, do you believe him?"
If anyone knows of a decent psychiatrist who has experience in dealing with this type of thing, please let me know.
This resonates very heavily with me. I have a family history of cysts. these are little sacs of keratin, the same stuff that forms your skin, hair and nails.
Cysts are normally small, and not medically necessary to remove as they are usually utterly benign. They don't usually therefore qualify for NHS funding for their removal. As was the case for me.
In my case, one became huge; too large to remain. In the end, it was removed and shown to be cancerous, but it still would not have qualified for funding as it was undiagnosed.
Here's something I bet you don't know.
Every procedure will be either funded by the NHS (you can get yourself on a list), or not (forget it, you need to go private). As a rule of thumb, if it is cosmetic, it is likely to be unfunded, and if medically needed, then it may be funded, but that is just a rule of thumb.
This is the bit I know through personal experience exists. The NHS also has an EXCEPTIONAL funding availability.
This is for those cases which would be normally unfunded (like cysts), but through circumstance, or just the case being so unusual, they will step in a fund a procedure.
Not all Doctors are aware of this either. The reason I would guess is that they would otherwise be swamped with applications. When I qualified for it to remove a tumour, one senior dermatologist had to explain the process to his colleagues.
There is no hard a fast rule on what would qualify. I suspect that you would need to show that what are enduring is so detrimental to your physical health and that your condition over all is so exceptional that it requires funding. I cannot give advice here. Whether you qualify or not would depend on a Doctor's assessment on your condition.
So, I would start like this.
I assume you have been given options privately on what procedures they could do. this will not be a question of what procedure you WANT, but what they can offer to help.
Take that information to your GP. Explain in detail the effects that this is having on your mental and physical health.
Then ask the question. Could this qualify for NHS exceptional funding? I think that there is a form the GP or your consultant will have to complete if they concur that it should. They do the application for you, rather than you, as they will have to justify in detail why this is indeed exceptional. You may for example be able to justify that this was the result of a medical condition. But remember, it goes to a panel who will say, just we could do this surgery, but alternatives exist too, The key word here is "EXCEPTIONAL".
Be prepared that surgery is often a last resort. You may need to change your GP if able if you don't get anywhere. But have a couple of conversations first before you do something drastic like change surgery.
Also remember that rule of thumb about is just that, a rule of thumb. Some cosmetic surgery is available on the NHS. Breast reconstruction often is.
When I went down this route, I found it be really tiring. Expect to have to bang on doors a lot before you get there.
But your first goal is to get a tame GP to concur that yes, surgery would help your overall wellbeing. They will then worry about the paperwork.
Additionally, i must say for clarity. There are no guarantees with this, but keep in touch if you need any morale boosts. This is NOT an easy process….
Keep a diary of any and all effects this is having on. All problems, any issues, log them.
And i cannot believe your bod who says “you’ve seen them once and you believe them?!” Yes because they are medically qualified!!
No, you arent making this up, but its not the easiest thing to fix!
ALSO> This is based on NHS England given that there are service variations between the four nations,
Apologies that it has taken me a while to come back to you, but this information is really helpful and much appreciated.
I went to a Psychiatrist because I thought that their opinion would carry more weight with the GPs, but my experience with this person (and not to mention the huge cost) has really put me off.
I will maybe take a reference letter from my counsellor about the immense impact that this has had on my entire life from a mental health perspective (i.e. I have pretty much become a hermit because of it), and the recommendations from my surgeon for surgery, and hope for the best.
Hmm, i can see why you might be put off if you got that reaction, but try not to let it. With this kind of thing, you may very well have to be absolutely like a dog with a bone….
I would start just with the conversation with your GP. You can always keep that evidence from the pschiatrist in reserve until you need it.your GP may be aware of alternatives you arent, so perhaps a good tactic might be to discuss the surgery you are interested in first and see what the GP thinks first. You could then strengthen your argument with the evidence later if needed. Its one of those conversations you will just need to plat by ear though. Best of luck CB
Hi Sarah030609 and thank you for posting your thoughts here. Other members of the forum will certainly agree that seeking the right help from NHS when having a visible difference can be a long and often challenging process. Hopefully sharing your experiences with the community and reading about other people’s experiences will be helpful even if it doesn’t provide you with any specific answers.
I'm sorry to hear about everything you have been through with your illness and the financial difficulties it has brought with not being able to go through NHS and going private for diagnosis and procedures. It sounds like you have been through a lot for a long time and that could have been easy for you.
Just a gentle reminder that we try not to talk about particular named doctors, clinics, etc. in the forum. Other than that, it is okay if people want to ask questions and talk about their own experiences or give their opinions as long as it's clear that it's given as a personal experience and isn't recommending anyone or anything specific. Hope that makes sense but please let me know if you have any thoughts or questions regarding this.
I hope that you will continue to find this a helpful and safe place to hear from others and share your thoughts and feelings.
Hi Eva, thanks for the reply and apologies for the delay in coming back to you. It has definitely been an extremely difficult time and I'm just glad that the tissue loss has stopped, so I can at least look at rectification for my problem now, instead of living with the fear as it worsened. I would never mention any names/clinics or clinicians specifically in my posts, not to worry about that. But I do think a key part of support is being able to talk frankly and honesty about the challenges faced, and sometimes this does involve pointing out difficulties or problems with healthcare received. Thanks, Sarah
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