Why do I keep falling through the system?

patriciamary

Hi all, just feeling a bit down. Everytime I take a step forward I get pushed back two steps. Was seen by private rheumatologist as part of the waiting list initiative. He wrote to my GP, end of story. After repeatedly requesting to be reffered to OT with no joy. I went into see GP and she says I'm going to refer you to OT. (she left practice the following week) Fantastic I thought. Three months later I contact the OT and they have no referral letter. Ask GP, they provide me with a copy of the letter they say they sent to OT. OT finally arranges to visit me. She was very good and provided me with lots of gadgets to help me round the house. She also measured up my stairs to have extra bannisters fitted inside house and on the outside stairs (our house is on the crest of a hill). That was Dec 09. Been phoning the OT for weeks and finally leave message to say "whats happening about bannisters". The message she received said "I have the bannisters fitted". So eventually I speak to her on phone and tell her "no bannisters". OT contact social work who are supposed to arrange fitting. They said they passed the order to contractor, contractor says they have'nt received it. Outside bannisters request was sent to another department to arrange an assessment first. Wrong, OT had allready assessed me so the request should have been sent to the contractor. Probably with the one they say they have'nt received. OT also referred me to physiotherapist. After a twelve week wait, I get a check over and sent away with a list of excercises to do and a promise of a letter being sent to my GP to refer me to the pain clinic. That was 10 weeks ago and still no referral to pain clinic. Also GP sent me for lung function test on the 23rd Feb, nurse had lost cable for the machine and was waiting on a new one being delivered, given an appointment for 9th March. New cable did'nt fit machine, nurse will sort this out and phone me with another appointment when new cable arrives. I phone the nurse on the 30th April, wondering why I had'nt received an appointment. Nobody knew why, but they will phone me back. Got a call back and the nurse is going on holiday so can only give me an appointment for 25th May. I wear splints on my hands, and when I requested a new pair they were posted to my name and address but in the wrong village and it took just over three weeks to get to me. How come everything related to me gets lost, sent to the wrong people or just forgotten about. Am I paranoid or has the whole system fallen apart and this is the normal level of service within the NHS. Thanks for listening I feel so much better getting all that off my chest!
Trisha

dorcas

Oh Trisha....what a terrible tale of poor quality services :shock: :shock:

This is awful for you...no wonder you feel as though you have fallen through the net. :roll:

It must be so frustrating having to chase up every single referral...good old nhs :?: I don't think so.

hope things start to pull together for you soon. You should consider complaining to PALS about this neglectful lack of support and treatment.

Iris x

cheshirefay

Hi ,
It sounds fairly typical to me, I have learned from caring for my Mum ,who has kidney failure ,that you cannot assume anything where the NHS is concerned.
I have to follow up every single test , blood result , referal with a phone call to make sure it has been done or sent. 7 times out of ten it hasn`t .

Sorry to hear you also have had such a frustrating time, I think the best advice is to assume there will be a problem then if there isn`t it is a bonus.
Fay x

livinglegend

I would suggest that you you make a complaint about the standards of service. These lazy, incompetent people cost us millions of pounds.

You, nor anyone else, have to suffer like this. Can I suggest that you initially contact the Independent Complaints Advocacy Service who will support you with your complaint. There are a list of local phone numbers on NHS Choices at: http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx

Good luck.

Joseph 8)

dreamdaisy

How very frustrating and what appalling service. I agree with living legend, you have to lodge a complaint or perhaps a number of them: in addition to his recommendation also include your GPs practice manager and the manager of OT. They obviously have flawed systems but may not realise it until someone brings it to their attention. It is so wrong that you have to fight this, you have enough on your plate, but needs must, I suppose. Please let us know how you get on. Dreamdaisy.

frogmorton

Blimey Trisha :shock: :shock:

You have had amazingly bad service :shock: incredible.

I think Joseph may well be right too. If you have the strength to complain you almost certainly should.

I hope you get the lung function very soon - I remember the lead being awol then the new one not fitting story.... :shock:

Love

Toni xx

cthornley

Oh Trish you really don’t seem to be having much luck ((()))
As Dreamdaisy says until you bring it to their attention how rubbish they are being they probably won’t notice and will continue being this way.
I think that you have had an unfortunate run of events and that is more than enough to make you feel got at. To give you hope not everybody is like this over the years I cannot fault the majority of my medical and disability assistance I have had. I learnt early on though to ensure that you keep on top of things and never assume something is done until you have the result, phone/ write / nag and amazingly things get done much quicker (I use this theory with my husband too...I think it works because people are eager to make you finally shut up!). I had a bit of a useless consultant for a bit but since i’ve sacked him off and got a new one who is just a better fit for me. Things have been going great. I must admit the longer I have had this damn condition the better I am at doing this kind of thing. I am a bit of a terrier at getting things sorted at work and I have started to view my condition in the same way as it is just a good way of getting stuff done, I don’t have time to faff about so its worth spending the time hounding people so I am able to get on with my life.
I hope that this is just a blip for you and that things will improve
Chrissie