Do the nhs not do definite diagnosis any more?

[Spine Wars 2023]

Hi,

Really fed up and perturbed. Attended lymphoedema clinic recently and came out with a stage 2 primary diagnosis (or so I thought) got home and written over the records is it's only 'likely'. They didn't take my weight, ask me to strip off to do a full body check, even check what other medication I was on and just seemed to come to it's late stage 2 by way of skin check. Just felt giggled at and no real understanding I'd like my life back. To wear normal shoes, go in a swimming pool, not have to have district nurse visit etc.
Got to the point I just want to wear these wraps which will hopefully do more then the compression?!

I had similar experience earlier in the year; no one could tell me if I'd had severe cellulitis or necrotising fasciitis. I appreciate I was emergency operated on by an Orthopedic surgeon as opposed to anyone with a specialism in skin conditions, it was suspected by a GP later the lymph fluid was forcing its way out where they'd left suspected lymphoedema/oedema a long time so a surgeon removed a little flesh and fluid blisters which went for testing but didn't come back with any results apparently. The surgeon themselves were only like 50:50 with a diagnosis of lymphoedema, they wanted firmly to say my (remission) diabetes played a key part and that I'm not clear of nf coming back : (

I'm really concerned how this works with the likes of making a pip claim and dealing with future medics with all this up in the air medical conditions. I've had people say awful things like it is good you've put diabetes into remission, least you won't get the complications but how can it be uncomplicated to end up with these infections effecting the lower limbs.

Looking up cellulitis, nf, and lymphoedema, they all state can contribute to a psychological impact, so I'm pretty sad I I've found myself having to pay for anti depressant treatment.

Should I fight to see Vascular? the clinic did write in the report to the GP they might like to consider this. Sorry for the rant I just wasn't prepared to see the word likely.

 

[Rokaab]

The NHS do do definite diagnoses
But, was it an HbA1c check they did or just a finger prick check - if it was a finger prick then they (the HNS) cannot diagnose from that anyway, needs to come from an HbA1c (normally 2 fairly close together I think, 2nd one for confirmation)

If it was an HbA1c they may need someone else to verify it as the lymphodema clinic may just not be able to diagnose that officially cos its not what they do - ie, yes you probably want to get your GP to do the blood tests

[Edited a typo]

 

[Spine Wars 2023]

Ah thank you, no nothing to do with the HbA1c sorry for any confusion.
In my other comorbidities there is no likely about it under active thyroid, a gynae problem, except the remission for diabetes can come and go. Wonder if it is treated like menopause, they won't test bloods under a certain age so that must only be listed as likely.

The surgeon from April did leave an open appointment for 6 months but I see his point, they are there for more mechanical Orthopedic matters.

I just don't know if I like the idea of something noted as likely.

 

[Rokaab]

I just don't know if I like the idea of something noted as likely.

Go to your doctors then, the hospital departments not associated with diabetes would be very unlikely to diagnose you with diabetes anyways as that is not what they do, they diagnose and do stuff for their own specialities not others

Your GP can do the proper test and then a confirmation test if they feel it necessary

 

[grantg]

I'm really concerned how this works with the likes of making a pip claim and dealing with future medics with all this up in the air medical conditions. I've had people say awful things like it is good you've put diabetes into remission, least you won't get the complications but how can it be uncomplicated to end up with these infections effecting the lower limbs.

Looking up cellulitis, nf, and lymphoedema, they all state can contribute to a psychological impact, so I'm pretty sad I I've found myself having to pay for anti depressant treatment.

i've uploaded the following which is for adp same rules for pip. its the decision makers guidance. that should help anyone with filling in application. I'll also add meds for physcological OR seeing a counsellor of sorts would go a long way. you could speak to your gp about referal if its needed for mental health well being. even local support network groups could mean the difference of sucess or not. if you prefer to grab files they are from a mix of whats on scotgov pages, decision makers guide alongside the uk gov page. this is just a collection of relevant materials. hope that you may find it useful.

Decision makers’ guide: staff guide

Guidance for DWP staff who make decisions about benefits, pensions and allowances.

www.gov.uk

Social Security Scotland - Decision making guide

www.socialsecurity.gov.scot

edit added below:
sorry can't help with the primary issue

Links edited by moderators to confirm to forum rules

 

[Spine Wars 2023]

Again this isn't about my diabetes. Hence my posting in other conditions sub section.

I have already been though the GP to get to a lymphoedema clinic after so many weeks waiting understandable, who I would have thought could provide a thorough diagnosis. Not leave it so wholly wishy washy as its only likely.

The GP really rather gets to do very little when you are meant to be house bound under district nurse care.

I don't know, I've posted on a support group for the condition as well do you have to live with lymphoedema a certain period of time (?) before it makes it to the medical info part on someone's record.

Sorry to have clearly bothered you Rokaab.

 

[Spine Wars 2023]

i've uploaded the following which is for adp same rules for pip. its the decision makers guidance. that should help anyone with filling in application. I'll also add meds for physcological OR seeing a counsellor of sorts would go a long way. you could speak to your gp about referal if its needed for mental health well being. even local support network groups could mean the difference of sucess or not. if you prefer to grab files they are from a mix of whats on scotgov pages, decision makers guide alongside the uk gov page. this is just a collection of relevant materials. hope that you may find it useful

edit added below:
sorry can't help with the primary issue

Yes I get this and the fact pip is based on how the condition affects someone rather then formal diagnosis, which I'm actually very grateful with the record clearly in a mess and any engagement with the nhs over this last year not leading to any formal diagnosis. Cannot believe we are meant to be in this 21st century with all the digital things and no one can be clear what I've actually been through.

Quoted post edited by moderators to conform to forum rules

 

[Lakeslover]

Hi,

Im sorry to hear what you have been going through, and can understand how stressful it is when no one seems to be able to tell you exactly what is happening.

I have lymphoedema in my arm after having lymph nodes removed so different from your situation.

When I was referred to a clinic they measured both arms and confirmed the diagnosis as one arm is significantly bigger than the other. I’ve tried lymphoedema massage by a qualified practitioner, a machine the clinic have which is supposed to improve drainage basically by putting pressure on from finger to top of arm, and a compression sleeve. Nothing made much difference.

I believe it is possible to also confirm the diagnosis by scanning, but I don’t know how easy that is to access.

I have to be very careful with any insect bites or scratches as it is easy to develop cellulitis. I have had cellulitis with no apparent reason, I suspect a scratch or bite too small to be seen.

 

[Spine Wars 2023]

Thank you, I'm really sorry for your plight.

Mine I think it battling obesity long term, the continual losing weight and putting it on, I do agree with the district nurse.

I would dearly love to get liposuction privately but the scarring is probably to bad and necrotic now. When I got to the clinic I was just given wraps and told that'll sort it but I've been in compression since July with no improvement but I did get to a slimming group last night and a person turned up with legs I'd say are akin to lipoedema, just completely exposed with no support so maybe it is something not really taken seriously in the area in which I live and I should be grateful I got wraps.

I had a post surgery mri scan which confirmed oedema, believed consistent with having cellulitis.

I've just come to the conclusion the doctors really don't know enough about lymphoedema and feels this is a condition treated along the lines of ibs and fibromyalgia. We'll just put this maybe label on it.

 

[Lakeslover]

When mine first started there were no clinics in my area so things have improved.

I did lose some weight a couple of years ago and it made a difference.

 

[Spine Wars 2023]

Yep thanks for your thoughts. I have dealing with obesity since childhood I was diagnosed aged 10 with under active thyroid.

I was promised all sorts on leaving hospital such as plastics - I would be annoyed to later find out they could have solved this.

I'm pretty sure a friend of mind would not have accepted their diagnosis of adha as only likely.

I'd lost massive amount of weight years ago and then had it go back on which a district nurse (of their many opinions) said may have have actually been the problem, but weight loss certainly hasn't improved with anything I've done since diagnosis of diabetes in 2019 and watching a programme recently of a person who themselves had necrotising fas and left with fat wad of skin like mine, weight loss surgery wasn't the saviour either so I really don't know anymore.

I've refused to become bed bound, I still try and walk, I've kept my weight pretty stable for someone now off the GLP1.

 

[Pipp]

Hi, @Spine Wars 2023

I can understand your frustration, as something similar happened to me. Fifteen years ago I lost a lot of weight, 49kg. I had also over a period of 20 years had 6 major abdominal surgeries. I suffered a few complications after the last two surgeries, and a year or two later one of my legs had swelled with pitting oedema. My GP insisted the swelling and asymmetry was due to me losing weight. I queried this . Does somebody lose weight in such an uneven way that one leg becomes almost twice the size of the other?

I asked for a second opinion. Was willing to pay. Amazing how quickly you can get a private consultation. I got my appointment within two days. Strangely I was referred to an orthopaedic surgeon. Who was as bewildered as I was as to the reason for the referral to someone dealing with joint issues, when this was clearly soft tissues. He was also infuriated by the fact that the letter from GP also stated the wrong leg! I joked that I was glad I wasn’t seeing him for amputation. I think there was concern that I would take legal advice about the GP error. I wouldn’t, but it seemed to expedite my NHS investigations with ultrasound, MRI, doppler scans, and an assessment by a vascular surgeon, who diagnosed stage 2 lymphoedema, in leg and abdomen, due to lymph nodes being removed and / or damaged during the previous surgeries.

So I was referred on to the specialist lymphoedema clinic. Where a circular argument with weight management service began. Lymphoedema clinic refused to even see me, because I exceeded the BMI limit. Said I should be referred to weight management service instead. Weight management service had already discharged me as I had lost 49kg, and they believed that a lot of the excess weight was due to the fluid retention from the lymphoedema, which needed treatment. Neither of them would budge.

I was becoming more and more immobile, and very depressed. I needed a wheelchair to get out and about. I didn’t want to be seen, and my social life suffered. No longer went swimming , which I had previously done every day before work.

Finding a practitioner qualified in Manual Lymphatic Drainage was the best thing I could have done. (The organisation Lymphoedema Support Network, has a list of these)

About the LSN | Lymphoedema Support Network - LSN

THE LYMPHOEDEMA SUPPORT NETWORK Registered charity No. 1193800 ‘The Lymphoedema Support Network (LSN) is a registered charity and the UK’s national patient supp

www.lymphoedema.org

The practitioner taught me how to do this very gentle MLD massage myself, and advised on compression aids. She also had information about a consultant service available, at Guys and St Thomas hospital. (This was in 2018, so I am not sure if there have been changes recently.)

I now manage the swellings myself. Using the MLD technique. If I sit for a long time I have to elevate my feet but also get up and move around frequently. I had a compression garment made for the abdominal swelling, by NHS orthotic department. It was far too uncomfortable, so decent lycra underwear suffices. I sometimes do have to use tubigrip under tight bandaging for lower leg and foot. Have to buy shoes for the largest foot, (which is between one and two sizes larger ) and fit spacers inside shoes for the smaller foot. Sensible, lace up shoes. The pretty shoes are a thing of the past, but on a good day I lace them up and get out and walk. I also go to the swimming pool most days. Exercise in the water, and some directed physio help to avoid the excess fluid build up. It was hard going to the pool the first time. I thought people would be unkind. I found the opposite. Also, I would estimate around 80% of people are more hung up by how they look themselves to take much notice of what others look like.

It is vitally important to look after skin. To cleanse and moisturise. I have had cellulitis, after getting a small scratch from a bramble whilst out walking. Essential to get treatment rapidly if it looks red hot and uncomfortable. Another time a midge bite. Very painful, and I fortunately got antibiotics early.

If you are intending to apply for PIP, be aware that it is not the condition, but how the condition affects you that scores points on an assessment. You already will have some info on your medical record with a diagnosis. Especially as you have been seen in the lymphoedema clinic. Ask for a GP, nurse, or other HCP, to clarify this in your records, with specific details of diagnosis, and the difficulties you have, including any treatments. Keep a diary yourself, of what you find difficult, and get anyone else who knows you or lives with you to provide a supporting statement.

There is some useful information about claiming benefits in the BenefitsandWork website, including a self test.

PIP claim help, plus ESA, DLA & Universal Credit

Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments, reviews, appeals.

www.benefitsandwork.co.uk

Personal Independence Payment (PIP) self-assessment

Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments, reviews, appeals.

www.benefitsandwork.co.uk

including a self test.

If necessary, seek help from welfare advice centre or CAB.

Hope this helps.
Best wishes, Pipp.