Hi all, took Dom to see Prof G yesterday and was discharged. Being honest I
think he is extremely overworked because I found this follow up very
different to the first appt with him and left feeling quite frustrated, as
if I didn't have enough of a chance to talk to him or for Dom to explain
all his problems. When we first saw him I left feeling so hopeful. Since
his letters the school and GP have taken things much more seriously. I just
felt a bit disheartened yesterday and I don't really know why?
Prof was short on time, which I understand as he was running about half an
hour late. He didn't examine Dom, but Dom told him the pain was getting
worse and he felt a lot worse. Prof asked why the authority hadn't agreed
to Dom going to Bath for pain management. I explained that they refused
because they didn't believe it would help, he said "didn't they read my
letter" then told me to complain to the MP and the Queen. I will complain
and ask again because I need Dom to get the help he deserves.
I explained he has started getting breaks in his small bones and he said he
definitely needs the bone density scan to be sure as to why.
Then, I knew the next bit was coming, he told me Dom was overweight. I
weigh him regularly and his weight was different on the scales to at home,
prof said even if I was right Dom was overweight. I could see Dom getting
more and more uncomfortable. He said Dom needed to join a gym, I explained
in our area they don't allow under 16's into the gym because of health and
safety (plus on income support I would find it hard to pay for an expensive
one such as David Lloyd that do have under 16's). Eventually he said he
would get the GP to find a gym for Dom that would be ok for a 14 year old
(he is 14 and nearly 6ft, weighing 15stones - I know it's too much to weigh
but it's very hard to lose weight when you're laid up most of the time -
lately he's been struggling far more than usual, he's just getting over a
broken wrist and hand that happened 2 weeks apart.) I want him to have the
help, and to lose weight, just no-one would believe that Dom eats less than
Cass who is 20, 5'2" and weighs 8stone. Even Cass said "well he doesn't eat
as much as me" when we got home.
When it was time to leave he said "well it's a long way to come to say
hello so I'm going to discharge him, if you need a re-referral I'll be
happy to see him in the future"
I just feel a little 'dropped' and it was worse because Dom was so upset
afterwards and in so much pain today with his neck, finally tonight he
broke down in tears. He said he couldn't cope with the thought of going
back to no-one caring and helping him, plus he felt like the Prof was sick
of him, even cried and said he didn't get chance to tell him about all the
new things that had happened and all the problems he was having.
I feel such a moaner saying this, I should be greatful for any help at all,
but the first appt was so amazing then this one felt such a let down.
Having said that when I think about it, there's not a lot more he can do if
the area won't allow Dom to go to Bath either ........ it's not like he was
saying Dom's perfectly fine now get lost, he agreed Dom needs more help,
but what can we do? I'm more upset that I had to watch Dom upset I think,
and that's always so hard watching your child cry in pain and watching them
hitting such a low
41 with HEDS, autonomic dysfunction, IBS, migraines, fibromyalgia,
osteoarthritis, high blood pressure, underacive thyroid
Son 13 : HEDS, autonomic dysfunction, IBS - appt UCLH 27.4.2011
Daughter 19 : HEDS -awaiting appt UCLH
Dad : HEDS
jakerleenenthusiast Posts: 322Joined: Sun Jun 17, 2007 8:52 pm
> know very well how you feel
> I also had a very disappointing experience when I saw a professional the HMS clinic
> exactly a year ago. He was very busy then also (running an hour late), but
> no matter how late or busy you are, that doesn’t excuse being rude (he
> snapped at me too when I wasn’t giving the answers he wanted and asked
> questions he didn’t like) and not providing the same standard of care that
> other people get.
> Have you seen your GP about getting referred to a dietician or maybe
> getting Dom referred to have some tests if you think that there might be
> another reason why Dom is struggling to lose weight?
> I also felt really let down and abandoned after I got no help from my
> appointment with a professional whatsoever. I think it was because he is
> the country’s leading expert in HMS/EDS, so if he doesn’t understand, who
> will? I felt quite hopeless after my appointment, even though I didn’t go
> in with particularly high expectations. All you can do right now is keep on
> fighting for Dom to get the help he needs, ie the referral to Bath – maybe
> not write to the Queen, but perhaps write to your MP and you could also try
> local media.
> It must be terrible feeling so helpless when seeing your child in so much
> pain. At least I am an adult and am quite good at standing up for myself
> and complaining about getting the help I need. I think it’s very important
> to let Dom know that it’s not his fault, it wasn’t anything personal and
> that there will be someone else that can help him. It might take you both a
> few days or weeks until you can feel positive and up to fighting for help
> again, but you will get there and we are all here to support you with
> I hope things get better for you and Dom soon!
> Purplesheepenthusiast Posts: 213Joined: Fri Apr 02, 2010 3:13 pmLocation:
> Coventry, UK
The HMSA does feed back information to Medical Advisors and UCLH whether negative or positive at their request. We would like to stress that we really do care whether you receive a poor service at any hospital we support and recommend. However, we have to be very careful and we cant allow direct naming of professionals because of the risk directly to the charity, and of causing offense to our Medical Advisors and the professional relationships we have with them on behalf of HMSA members. We ask that whilst you can say you had a rotten time and why... that you do not make any personal comments about any of the professional or name them. I would be happy for you to be more specific in an email to me at email@example.com and I will of course pass on the feedback.
We accept that the way we have to moderate these posts can cause upset and we do apologise for that but the staff and moderators have a duty to protect the HMSA from any potential legal issues as well as a professional curtsey to the professionals at the services we recommend. But we would also like to stress that those people who do not feel that they had a good service have a right to express their disappointment and frustration. Their opinions are just as valid and important as those who receive positive services.
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