Tears of Frustration

[ICAWM]

Oh I'm so fed up and I don't know what to do.

Get comfy (it ain't a short story). I was referred by consultant at sleep clinic direct to Kings in 2012. I had my group session with them in March 2013 and told I'd see consultant in 6-8weeks. Got required blood tests done and waited.

My appointment came through for OCTOBER 2013. I called, confirmed that was earliest I'd be seen. Tried several times for cancellation, no joy.

As is often the case with Law of the Sod, I ended up in hospital with breathing problems and couldn't attend (different hospital). I called on the day to explain and next available appointment was MAY 2014.

I was already despairing.

In October 2013, I researched other providers and found out that BMI LOSS, Sudbury Clinic (part of Streamline Surgical) were doing nhs surgery with turnaround of a few short months. Leading consultants in bariatric field, starred in tv documentaries, I was so excited.

I had MDT session in December 2013, where I met dietician, anaesthetist, psychiatrist, surgeon amongst others and they confirmed I'd satisfied Tier 3 and approved me for Gastric Bypass which they hoped to do Feb/March.

You still with me, or you nodding off?!

March was looming and I'd still not heard so I started to call and get fobbed off, then email and hear nothing. After more calls and emails I received a letter to say that NHS hadn't signed their contract or something and they couldn't perform nhs procedures until they did. Due to administrative delays within nhs, they couldn't give indication of time. My options were to wait (but unknown how long) or ask GP to refer me elsewhere.

Well done for sticking with me so far...

Soooo, tears, tantrums and low mood followed. My tiny glimmer of hope was Kings, who I'd never been un-referred from. I attended today for appt with consultant. I saw no consultant. Saw a nice but very stressed nurse. She was delighted I had letter from other hospital confirming completed Tier 3 as she said that would speed up my treatment. Phew I thought. She said she'd put me on the list to see actual consultant in 9 months. She'd do that so I didn't get lost in system. NINE months.

So I gave blood results (that are over year old now) and of course they're no good. So got more taken today. She's worried that as I can't do two flights of stairs without getting breathless. She think he'll want me to see their cardiologist. Seriously, can anyone with BMI of 50+ do stairs without breathlessness?!

I asked the obvious - so this means I definitely won't get op this year. Maybe, just maybe next year.

So here I am. BMI now over 50 which is higher than before (and I don't think I'm shorter) and feeling more and more restricted, despondent and unhappy than ever.

I live in Kent, cannot afford private and just really need something good to happen for once. I really thought I'd have surgery this year to be on the right path leading towards my 40th next summer. It's no miracle cure, it'll take work and commitment from me, but now it seems so bleak.

And breathe. Ok, got that off my chest. Sorry for wittering but I'm so fed up and really don't know what else I can do. Any ideas?

 

[Yvessa]

Contact PALS. Seriously. Explain everything you've gone through and ask politely whether or not you should be having your op sooner, given the NHS waiting times of 18 weeks

 

[ICAWM]

Thank you. I have tried searching for who to speak to and have been tying myself in knots. I'll try PALS. I kinda assumed bariatrics didn't count in 18 weeks as it's been dodged every time I tried asking. I don't think I've heard if anyone being treated in 18 weeks.

 

[Yvessa]

The issue is it's supposed to be 18 wls from going on the list. If they stall you before that it shouldn't count. But still worth a try.

 

[princess4d4]

hiya so sorry all this is happening to you the time is 18 weeks from being listed under the current nice regulations i would get back onto them or as yve said get hold of pals and the very best of luck that you get a result soon

 

[ICAWM]

I suspect as BMI LOSS currently cannot provide nhs services, that the 18 weeks won't apply. So I have to start over with new supplier. I'm not even going to see consultant at kings until 2015, let alone start their 18 weeks. It's so disheartening. I was so close and now everything is so rubbish ?

 

[Yvessa]

I would still contact PALs and see what they can offer. If you can get your GP to write a letter of support and have a list of all the reasons you have a poor quality of life now and how things will be different after the operation.

 

[princess4d4]

i would just keep pushing you have come to far now to let it beat you and we are all here behind you keep the fight going it is hard but it can be done

 

[ICAWM]

Thank you both.

I've tried looking on internet on who to speak to but it's like chasing your tail. I've sent a looooong email to the helpline of the Patients Association to get an idea on who I should speak to.

When I searched PALS, they were linked to each hospital rather than near me so I want an overall coordinated approach. I'm sure they'll point me in the right direction.

Urgh why on a bank holiday weekend? I'm so impatient! I want to join in on losers bench with my success stories but it seems two steps forward and three steps back :-?

 

[XPaulineX]

Have you looked at Chichester? Referral to surgery was about 8 months for me....and the care was great. Must be very frustrating! X

 

[heavenlykaty]

Wow Pauline you were very lucky for 8mnths only, was that from being put on the list or from the very beginning of your journey?

I had to do 1 year on the 3 tier rubbish thing before I got to St Richards, I am on the list from beginning of April and I was really hoping for around July??? fingers and toes crossed.

Very best of luck ICAWM, I hope there's a quick way through for you x

 

[XPaulineX]

I had been on tier 3 for about 10 months before considering WLS. Waiting time was from GP referral. Had MDT assessment in December and Surgery a week ago. Think I have been very lucky!

 

[ICAWM]

I had been on tier 3 for about 10 months before considering WLS. Waiting time was from GP referral. Had MDT assessment in December and Surgery a week ago. Think I have been very lucky!

Which Chichester hospital is this? Is it part of Streamline Surgical? If so, I wonder if they can just transfer me internally as I've already seen their Dr Pring as part if the MDT in December... Interesting...

 

[XPaulineX]

St Richards Hospital in Chichester. Chris Pring definately works there because I saw him for my MDT assessment. He didnt do my op in the end....I had a new consultant Mr Osbourne (Lovely). Worth looking into. Was a long journey from Kent....but I am happy to do the travelling. X

 

[ICAWM]

I'd have to travel wherever I go so it doesn't make much difference to me.

I've checked out their website and see many familiar faces. I've emailed my request to them outlining how I've seen their team at MDT and been approved so asking if could 'simply' perform surgery at Chichester as I'm willing to travel so fingers crossed!

 

[ICAWM]

After chasing again last week, I was told I'd raised some ideas they hadn't considered and forwarded details to Mr Pring.

Today I got a rather generic email that said option of private funding only applies if canceled on day of op blah blah and wouldn't refund private costs through nhs (which wasn't what i asked)

I asked about being treated at Chichester but they haven't acknowledged that part so replied to that effect.

I emailed a Patient Liaison group that I've not heard back from so I'm back to everything being bleak. I think feeling so close but now being further back then before I started is such a blow but it's affecting me more than I expected.

I'm trying to be proactive but I just want to curl up in a ball ?

 

[ICAWM]

Well I'm still getting nowhere fast.

I tried Patient Liaison who said I had grounds to complain, "please see attachment" but no attachment. I replied back over a week ago but nothing.

I do t know who I'm complaining about or to whom. I don't want to complain, I want the op.

I'm feeling so down and fed up, I dont know where to turn next.

I asked about Chichester but that would be new referral, no fast track.

Anyone know anywhere vaguely south ish that has quick (but good) turn around on nhs?

 

[Yvessa]

I would call pals again Hun! Keep chasing. This will be your quickest route - don't let them fob you off. Write a list of what has gone wrong and how you want them to fix it and keep on at them. Log every conversation including the persons name.

 

[ICAWM]

Thanks Y. I was going through Patients Association. PALS are linked to the hospital and as none are local to me, I'm chasing my tail as to who to ask. Sudbury/BMI LOSS/Streamline whoever they call themselves are listed as private (although was nhs) so via BMI and Kings is London. I'm in Kent. I won't see Kings consultant til 2015 so surgery is way way away.

Any other pointers? I'm truly desperate.

 

[widdershins]

OK - keep on PALS case - they have to stick to deadlines to give you RELEVANT answers.

Now, take a deep breath...
Its very frustrating, all the waiting.

I had my op at St Richards, and they were blooming fantastic! Their care was beyond measure - Mr Pring has just taken my gallbladder out, and he didnt have to do it!

Think all the hospitals have long waiting lists now. So, you need to weigh up which route is best for YOU.

Got no other advice, but wanted to acknowledge your post, and say hang in there!