Private vs NHS: Please could anyone that... - Endometriosis UK

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Private vs NHS

Louby84 profile image
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Please could anyone that has had private treatment share their experience?

I think I will need a 2nd laporoscopy as I don’t seem to have had much success since my first one last April with the NHS, so I’m seriously considering private with an endometriosis specialist rather than a normal gynaecologist.

It’s just whether the extra cost is worth it?

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Louby84 profile image
Louby84
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luthien profile image
luthien

I haven't had any of my treatment via the NHS, so I can't comment on that side.

I had my first appointment with my usual GP June 2017, and initially asked for a referral to the NHS, that appointment for the initial consultation with the NHS gynaecologist came through for October 2017.

I have insurance through my work for private treatment so I checked, and for private treatment you have freedom of choice to choose a specialist / consultant you want from a range of hospitals / clinics. I contacted one gynaecologist that specialised in endometriosis, fertility, heavy periods, miscarriages, and laparascopic procedures and they were happy to see me with my GP referral. All I did was contact my GP an mention "I'd like to be referred privately to XX, could you send them a letter". Then contacted the private clinic a week later to book my first consultation for the end of August, this as it's a new patient costs £250, they wanted to do bloods, and actually said "it's free on the NHS so here's our information, get it done with the NHS and they'll send the results to us". We discussed my history at the first consultation so I needed all my information, including symptoms, how long it's been going on for, what it could be, how much I know about different medical problems.

I had treatment for cervical ectropion privately (mid September) as initially my smear test results came back unknown (NHS June) and initial viewing of my cervix suspected it (NHS) combined with rapid onset new symptoms of bleeding after intercourse and pain after intercourse - specialist wanted to treat the issue causing initial pain, to see if that eased the other symptoms. The follow up appointment (early October) for this highlighted that there may be an underlying issue that needs further investigation - he suspected endometriosis. This is classed as a new diagnosis and cost £50. During this we discussed various treatments, and what he thought would be best - we opted for a laparoscopy diagnosis and removal, plus hysteroscopy so he could look inside my vagina and uterus plus take biopsies if needed. He wasn't keen on hormonal treatment because I'm already suffering, his view was "we need to have a look and remove as much as we can to make you comfortable".

I had time to go home and think, and contacted the clinic to book my surgery - I booked for mid November (I could have had the end of October but I had work commitments). The pre-op appointment was automatically booked for two weeks before (option to reschedule). My operation went well, I had severe endometriosis with it attaching my bladder to uterus and uterus to bowel. They could not operate to remove my endometriosis on my bowel as they needed a bowel surgeon present. This all went well, recovery was a day case; in at 7am, out by 5pm. I had my own room, bathroom, safe, tv, and lunch meal with nurses checking every 30 minutes. The cost for this comes through split. The operation itself cost about £1500, the hospital fees for room, meal etc cost £500ish, the surgeon has their own fee, mine was my specialist came in about £700, and the anaesthetist has their own about £400. The pre op appointment is covered by the operation as is the 2 week check up (December). The total for the operation was therefore about £3100.

During this check up he mentioned that by his records; if no other treatment options are taken usually women he has operated on to remove endometriosis he expects to hear that they have been almost symptom free for two years, they usually return within 3 to 5 years to consider a repeat operation. The fact that he has records spanning that far shows how long he has been in that specialism for and his experience.

I have my check up four months after the operation, this will be on it's own as £100 (March 2018). The obviously any additional things I want investigating / further surgeries will cost more - I plan to have the endometriosis on my bowel removed but I will discuss that in my check up.

I felt it was worth it to be seen by a dedicated specialist that doesn't want to just try other methods, leaves the decisions up to you, tells you as it is, and is happy to share his statistics, have the operation booked quickly and with your consultant you've talked to.

I hope my story helps :)

Louby84 profile image
Louby84 in reply toluthien

Wow. Thank you so much for sharing this!

It sounds like the whole process is so much more through when going privately.

I could kick myself as I didn’t get my private health insurance sorted out in time before my original diagnosis so I’m not at all covered.

It’s just hard to know whether to spend so much money on something, that for me came back so quickly (less than a year), but that could be down to a shoddy job last time.

I’ve decided to have my nhs appointment on Tuesday, and if I feel like they aren’t supporting me, I’ll go privately.

luthien profile image
luthien in reply toLouby84

I don't mind sharing if it helps :)

It'll be worth checking what you're covered for privately; it may be that they'll want to do the investigative lap again to confirm endo as that on their records is a diagnosis, but you may be able to get the diagnostic lap and removal of endo lap in one go. Sometimes private will want to start again.

I know it cost lots, it's scary, I'd never be able to do it straight out of my own pocket as I don't even have that much in savings.

You may be able to raise some funds; see if you can do a sponsored something or other: raise awareness and explain you get better treatment private..... There's all those gofundme things now!

Abigail16 profile image
Abigail16

Hey you can see an endo specialist on the NHS. If the waiting lists are too long for you though it might be worth paying for your first consultation with them and they may then suggest or you can suggest for your GP to refer you for treatment if needed on the NHS if I were you I would definitely have the lap on the NHS with an endo specialist because in most cases you’ll be seeing the exact same person just paying a lot rather than nothing x

Louby84 profile image
Louby84 in reply toAbigail16

I checked my nhs letter earlier, and I was hoping I was seeing the specialist I wanted, but unfortunately not:(

I’m going to ask the consultant if I can request the specialist and see what they say.

After all, I’m pretty sure the endometriosis is in my pouch of Douglas and I’ve heard they won’t touch that unless they are a specialist?!

Abigail16 profile image
Abigail16 in reply toLouby84

I hadn’t heard that about the pouch of Douglas but it does make sense. Are you seeing a specialist? I requested my doctor to send me to a specific specialist and he did x

Louby84 profile image
Louby84 in reply toAbigail16

No :( I’ve just been put under a normal gynaecologist. So I’ll ask while I’m at the hospital on Tuesday, and if they can’t change me over to the specialist I think I’ll have to go privately.

Starry profile image
Starry

I had an excellent experience going privately with an bsge NHS accredited surgeon. But I was going through employer insurance not paying myself.

The appointment slots for private clients are significantly longer than on NHS, so you get more time for questions and I felt that the consultant really took the time to get to know me and did a more thorough job than he'd have had time for on nhs. He was also very proactive in answering numerous questions via email which he would not have done on NHS.

The hospital also was cleaner, quieter and better run than my local NHS hospital (sorry to say I experienced it as an acute admission and inpatient not long after my surgery) and the nursing cover far and away better.

Most of all I got very quick appointments and surgery dates for both diagnostic and excision surgery.

It really depends on your symptoms and what you are willing to pay for. However after my experience of private and non private I will be paying out of my own pocket for private treatment in the the future when my insurer stops paying, which will be pretty soon.

Louby84 profile image
Louby84 in reply toStarry

Thank you for your advice, I had another operation ( for something totally different) privately last year a few months after my first lap, and I couldn’t believe the difference in standards.

I felt like I was in a hotel, but I did have to stay in a few days.

Were you in and out the same day for your laparoscopy?

Starry profile image
Starry in reply toLouby84

For the diagnostic I was meant to but had to stay in one night due to minor issues. For the excision, it was an extensive op involving the bowel and I was in a hdu 1 night and kept in a 2nd night, so I was out a day earlier than I was told to expect. Can't say as I remember much about the room itself as I was out for the count for much of the time, but the nurses were special.

Kangalou profile image
Kangalou

I have just had mine done privately. I have insurance through my employer so only paid the excess (£100).

I was seen by a senior gyno who practices at clinical director level and has an active interest in endo and pelvic pain within five days and had a lap six days later. So eleven days from GP referral to operation.

I was in as a day case but stayed overnight the first night due to a bad reaction to the anaesthetic. I also got a bonus night as the hospital closed due to bad weather (we had bad snow in scotland and a red weather warning).

The quick turnaround was amazing and what mattered the most, but as others have said, the experience is much nicer / single, en-suite room, good food, free WiFi, tv etc. Not really relevant if you are only in for a day but as I stayed longer these mattered more.

I couldn’t fault the staff- incredibly caring and I felt very safe with them. They were extremely kind and supportive.

I had quite a bad bleed from one of my lap wounds at the weekend and they saw me straight away (I live very nearby). My stitches also haven’t dissolved and whilst I was told to get them removed by my practice nurse, she has no appointments for a week, so they will do that for me too tomorrow. I can’t fault it.

I think another poster put the total cost at around £3k-£3.5k. I’d say it’s worth it.

Best of luck.

Louby84 profile image
Louby84 in reply toKangalou

Thank you!

That was a quick turnaround!

And I think that makes all the difference rather than waiting 6 months or more on the NHS, which most of us are in to much pain to do!

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