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Crazy girl
11th January 2012, 10:05
Hi all,

I was just wondering how long people have waited for a Peg to be fitted once it has been agreed with your consultant?

Reason is we discussed this in September last year with our consultant, was referred in October and we are still waiting for a date despite my constant chasing. Is this normal? And any ideas on how I can get this sorted?

Any help would be appreciated I'm ready to scream!
Thanks
Tracy

Robyn Copley-Hirst
11th January 2012, 10:40
Hi Tracy,

I've had a quick chat with Connect about this as this is something which, as you know, can be done, and is preferred to be done, well in advance of when the Peg is actually needed. We do have a number of suggestions which hopefully may provide a bit of support to yourself in getting this sorted sooner rather than later, especially given your frustrations.

1. Can I ask are you linked to a Care Centre? There's Cardiff Care Centre, and there's also a clinic in Swansea. If you are linked to one of these they should be able to help you do some chasing.

2. If you're not linked to a Care Centre - or you could do both steps if you wish - you can contact one of our Regional Care Development Advisers (RCDA). In your case I believe you to be covered in South Wales by:

SOUTH WALES - Jenny James

Gwent; West Glamorgan; Mid Glamorgan; South Glamorgan; Dyfed; South Powys.

Tel: 08453 751853
Fax: 029 2059 8849
web link here (http://www.mndassociation.org/for_professionals/local_support/regional_care.html)

The RCDA can give you advice and also help chase this up on your behalf.

3. Please don't hesitate to give Connect a call on 08457 62 62 62 and they're more than happy to talk to you more in depth about your individual circumstances and talk through any of your concerns about the timescales of this.

I hope this helps,

Robyn

caramel
11th January 2012, 11:00
My Mum was diagnosed in december and she's due to have a peg fitted in february, even though she did the standard denial about needing it yet until the mnd nurse told her what might happen if she didn't do it sooner rather than later.

Crazy girl
26th January 2012, 19:37
Hi both,

Thanks so much for your responses and sorry it's taken me so long to reply. It all kicked off after I posted this and my husband went into hospital shortly after to have his peg fitted. He was taken in as an emergency under our consultant in the end as his appointment came through for end of February. I'm still annoyed that it took so long for this to happen, as you say Robin all evidence suggests the sooner this is done the better and if it wasn't for the fact I wouldn't take no for an answer I believe he would still be waiting.

If only I had more time I would truly want to campaign for better understanding for mnd sufferers and for them to get what they need without having to push.......but for now, i'm grateful that my husband is home from hospital eventually and we are getting to grips with using the peg for feeds and building into our routine.

By the way, to maybe help someone in future.......my husband was in hospital for 6 days not the overnight stay our consultant told us and he didn't have any major complications! I guess it's good they were thorough and we have come away feeling very supported and knowledgeable about what to do.

Thanks
Tracy

mr_taffy
31st January 2012, 11:20
My mum seen her consultant last week on monday as shed lost so much weight and was in on thursday to have the peg fitted she is still in today but will hopefully come home later or tommorow. iv got to say they have been brilliant in my area with the help and support they have given us to date.

MND Connect helpline