Does anyone have any tips on writing a letter of complaint as the various hospitals can't seem to manage to get any of my appointments right or end up forgetting about me all together.
Does anyone have any tips on writing a letter of complaint as the various hospitals can't seem to manage to get any of my appointments right or end up forgetting about me all together.
I really hope you are not dealing with locations that are familiar with VHL. I would probably change those that I trusted to care for me. There are a number of CCC's in England. See the list of CCC's at http://www.vhl.org/aboutvhlfa/clinics2.htm.
Gale
Hi, there.
Hospitals (like most of us) do not appreciate complaints. So your "complaint" letter should be as positive as possible.
You might want to sit down with the nurse or whoever is scheduling the appointments, and ask constructive (not complaining) questions. Something along this line:
"I seem to be having some trouble keeping my appointments straight. Can you please go over them with me?"
(Put some of the problem on yourself, and enroll them in helping you fix your problem. They are usually quite glad to do that.)
"I had written down that I had an appointment on <date> with <Dr. X>. Did that get changed? or did I write it down wrong?"
"When you need to change an appointment, how do you notify me?" <telephone, postcard, or what?> I seem to remember that you changed your address and/or telephone recently. Perhaps they have old information? Perhaps they tried to notify you and couldn't find you?
Give them the benefit of the doubt. After all, your goal is not to criticize them, but to fix the problem, right?
"What's the best way for me to confirm my appointments so that I don't miss them and mess up your schedule?" <or have my scheduled messed up because our wires got crossed>
Good luck!
Joyce
Where abouts are you in the UK?
I have attended the Oxford clinic ever since being diagnosed and find them fantastic, would be interesting to know which area you are from.
I'm based in Durham so have to visit 3 different newcastle hospitals and a genetic centre for all my appointments. Had my recent one last month which should've been made for last september but they openly admitted they forgot about me. Only had one made for last month cos I've been chasing them again.
Hiya, i am based in london. I was going to three different hospitals then i was introduced to the VHL clinic which made things a little easier. My head and spine are taken care by one hospital and the rest of me is taken care of by the VHL clinic in another hospital. My way of dealing with hospital appointments is to write every appointment down i.e - when i have an MRI, CT or appointment and where - if i don't get an appointment then i call or fax the surgeon/hospital to see what is happening ... I keep calling till i get an appointment to see someone/get my results .......this way no one forgets about me or should i say cannot forget about me.
Regards
Sheela
hiya mate not talked to you in a while i also not havin good time with hosiptals im at a point now where i will just forgetvhl and let it do what ever now they dont do spine scans on people unless yr sufferin that dont make my daughter fill to good or take her worry away does it ive lost alot threw vhl and me and my family suffer threw it doctors dont make u fill any better thing is its us who go home an live with it not the doctors
I understand and I have never had a spinal scan so I think the care varies from hospital to hospital in the UK unless they are just purely unsure of the correct yearly testing that should be carried out.
Hope you feel better after chatting online last night x
thanks mate yeh fill better now just very angry at whats done here in england and havin to explain to my daughter she has to sit and wait befor doctors do anythink and maybe i wont catch it in time for her the presure this puts on a kid is unreal and they dont put her mind a rest if scans were given and its clear then maybe she can go on with life not worrying how can she beleave in the simtom if all she seen is death and illheath in my family and im all she got and she watchs me suffer
It is definitely NOT a good idea to "forget about VHL and let it do what it's going to do." Trust me, you don't want it to run rampant on its own. I have seen untreated VHL, and it's not a pretty picture.
The far healthier response is the one Sheela is taking in London. There is quite good care for VHL in England, but YOU have to take charge of your one and only body. Unless YOU take charge, who else is going to be as motivated as you are to do it?
Doctors and hospitals have hundreds of patients to worry about. Things naturally do fall through the cracks sometimes. But as Sheela describes, she makes sure they can't forget about her. She is proactive, and makes it work.
Don't just sit and complain about what "they" are doing are not doing -- Take control! Take charge! It's your body, and your life. What are YOU going to do about it?
And don't forget -- you can catch more flies with honey than with vinegar. People do not respond well to complaints. They do respond well to friendly reminders, good humor, a box of cookies or biscuits, and a smile. Everybody makes mistakes. Give them some space to be wrong sometimes, and help them to make sure it doesn't happen to you again.
Best wishes,
Joyce
I do agree that it is not a good idea to "forget about VHL and let it do what it's going to do" as from reading a substantial amount of documentation you can see the kind of picture Joyce is referring to.
And yes, I do believe that some of the responsibility is your own, to get up off your chair and actually do something about VHL, however there will be many that have already gone down the same route as Sheela and been passed from pillar to post continuously that has only lead to an increase the level of depression and lack of respect of the hospitals and doctors.
When you look at the UK and how VHL is actually managed within the hospital you will find it depends on your location, the level of knowledge or expertise will vary from person to person.
Unfortunately the level of support that we come to expect from hospitals, doctors is at time simply not there. If you are in the UK and being seen at multiple hospitals, the communication between them is non-existent. I know this for a fact, seeing that many friends and family have or still are working for the NHS.
Not only do I believe that if the service that anyone is getting from the NHS is below standard, you should speak up about it and if need be to make a complaint, but i believe it is entirely necessary in order to improve our own health service.
For a service that we ultimately pay for in the UK, we should not need to try to catch flies with honey, all we need it a fly swatter.
Thought i'd finished ...
As for the section 'Everybody makes mistakes. Give them some space to be wrong sometimes, and help them to make sure it doesn't happen to you again.'
For those that work within the health service, although they do make mistakes, unfortunately some mistakes cost lives.
hi everyone im not to new to vhl and i cant say ive ever sat back and not bothered about vhl ive always been fightin ive done alot of resurch on vhl and always asked for advice on any problem , i do ring and tell doctors im sufferin all the time ive always been friendly with them and never been rude in any way even when i didnt agree with my mum goin threw an op that in end she didnt make it threw i am angry i deal with this on my own and deal with my kids as well and ive lost alot threw vhl im 37 and fill like im 60 i use to have an atvte life with horses now i dont have that even a simple trip to town kills me , i lost my college course as well when all i wanted to do is help people its isnt good treatment in england im sorry to say , its like i was told i have a pheo left they took one gland out in germany i get here and they say no water test no good caue of my pain killers i cant win i know what vhl does if left alone ive seen it happen in my family ive been in the papers here in england to try and make awareness , when u go to vhl clinck i find people calm up we dont talk to each other they sit and just look why do people fill its so wrong to mix and chat here we dont have meetin only once a yr and many people cant get to them suport groups in england would be nice like this one ive always been ok with the hosiptals and doctors but stopin scans and things dont help conferdents does it i would even consider sayin dont do mt scans do my daughters instead if it is a money thing here in england but i need scans cause i do have spine tumors but how did i know i had them scans and was just in time cause i needed an op sorry if people read this and think i moan i dont as a rule but maybe its time i do have a say
hi my name is gayle ,batleys sister,i would like to say i very much agree with what lesleys is saying, lesley has to chase for her app with specialist, they do leave her a long time and when she's poorly which is most times she rings for help she gets fobbed off, i do not have vhl but i see what it has done to most of the family and still very raw from our mothers death my sister has two kids with this and when i went with her to the last app the eldest child who is 16 ask about her back and when her app is for her scan and he said theya re not doing it as she has no symptoms , does she have to wait for somethin to happern before she has scans is that how it works inthe uk does any child have to wait for these scans and other test to be done when somthin happens in there health surport .
I have to agree, I'm forever chasing my appointments with the various departments and get the same excuse of "I'll put a chase on it for you" and then if I'm lucky after continous nagging, ringing, emailing I'll get an appointment 6 months later. Wouldn't be too bad if there was an apology of them but nothing and its even worse if you try to contact them because you are poorly. There's seems to be a lack of support and communication if you have to go between a few different local hospitals for the various appointments in the UK. They are meant to be yearly appointments and you would think they'd set them up appropriately but no. The testing appears to be different from which part of the UK you are also.
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