Feeling lost

Tracey46

I had my appointment yesterday to see my rheumatologist I got a taxi to the hospital because it's quite far from where I live it cost me £60 there and back. I got to the hospital just to find out my appointment was cancelled, I'm so disappointed and don't know what to do anymore seeing as it's the fourth appointment to be cancelled by the hospital I was really hoping to get some help yesterday as I can't have my medication back until I see my rheumatologist and it cost me money I didn't really have. My arthritis seems to be getting worse I'm not coping with the pain it's everyday I can't make it to the toilet most of the time cos I'm crippled up in pain. The receptionist at the hospital has given me the number for pals to call them and complain so I will try this I just needs someone to rant too as I just feel so let down I feel like I'm not getting the help I need.

Naomi33

Morning @Tracey46

So sorry to hear your concerns😘

Please feel free to RANT better out than in as they say 👍

So frustrating but the NHS is struggling so much nowadays.

Can you not access patient transport or to far ???

I would definitely speak to PALS they have really helped me in the past so hopefully you will get support and advice from them to.

Sorry I cant give more help but sure there will be others who can advise you to.

Best wishes and keep positive.

@Naomi33

Tracey46

https://community.versusarthritis.org/discussion/comment/719105#Comment_719105

Thank you, I can get transport from 9 in the morning but they stop at 2 and my appointment was at 4:15 I normally get transport if my appointments are in the mornings, I just wish I was told my appointment was cancelled its the fourth time to be cancelled I've not been seen since last may and I can't get my medication until I'm seen I really just wish I can be seen by any of the rheumatologists as I feel like I'm just being left and struggling, I ask my partner is it just my appointments being cancelled they just move the appointments further down the year my next appointment is now in April but how much worse am I going to be getting to April with no medication my walking is getting worse and I'm struggling to get to the toilet and shower or just doing normal day to day things I sit in my bed doing nothing but watching netflix. It's no life it is getting to the point of me not worth being here anymore I might as well.

stickywicket

@Tracey46 , we all want you here. You are one of us and very important to us.

It seems utterly barmy to me that someone in need of transport, which is only available in mornings,,would be given an afternoon appt. And then not notified of its cancellation. This is something to raise with PALS.

You,might also ask them, and/or look on your hospital's website, if there is any affordable volunteer transport. My local hospìtal does that.

I've had RA for many years so I do understand your reluctance to move. But, if we don't, things just get worse. Weak muscles give our achey joints no help at all. I've always been told to do gentle Range of Movement exercises even when flaring. Try some of these https://versusarthritis.org/about-arthritis/exercising-with-arthritis/lets-move-with-leon/ and don't be put off by the instructions on getting down to and up from the floor😲 Just use the bed.

I'm wondering why your meds delivery was stopped. Was there a problem with your blood tests? If so, you might save yourself further delays by trying to get a blood test while you wait but this might not be possible.

If you're struggling to get to the toillet in time you could try googling Pelvic Floor Exercises. Oŕ try a thick pad. Or even incontinence pants.

All these little things that we can do for ourselves make us feel more in charge anď better about ourselves. And so they should😆

Good luck @Tracey46

Tracey46

https://community.versusarthritis.org/discussion/comment/719125#Comment_719125

Thank you I will take a look at the exercise I do feel my muscles have gotten weak my knees are at a point where I can't actually straighten them no more and I would like to do something to help the muscles and my knees. They stopped the delivery for my medication because they need scores that's what they told me and she said I get this when I go see my rheumatologist. I have been on the phone to pals today and they have helped me get another appointment next week so hopefully I will get this sorted so I can have my meds back it's an injection Im not sure how to spell the name of it but its similar to humria.

Emmasknackeredjoints

That sounds awful to leave someone in your condition. I hope next week you get answers.

Can social services help you arrange lifts or patient transport.

I often feel the taxi to hospital is expensive. It cost so much money to be unwell. Something people do not understand

Xxxx

MrDJ

So sorry to hear of all your pain your going through.

As someone that has worked for the nhs in xray for 43 years and also a rhumy patient i know exactly what your going through. been there and got the tee shirt.

As said, PALS is a must first off and i would also suggest phoning the hospital switchboard and asking to be put through to your rhumy's secratary and explain in a polite manner that this isnt on and can she do anything about it.

ill try to explain. majority of hospitals have set up call centres for all appointments. the people that answer the phones are literally there to book appointments and what shows on their screen is a diary. if they get a message to cancel a clinic they literally search for the next available date. im guessing it doesnt show how many previous cancelled appointments youve had so you just get moved down the year like a number and not a person.

Phone on monday and explain its been cancelled for the 4th time and as i mention lay it on thick like you did in your second post about giving up. the rhumy secs would have more clout in fitting you onto a early list unlike the call centres who know nothing about the actual clinics or what pain people are going through.

ps, and most importantly dont give up.

dalm, after all that i didnt read your last post.

Glad to hear youve got an appt next week.

Ive not had this one but Humira is a TNF blocker usually given by infusion drip. I believe they offer a self injection pen now as well. Maybe best not to google any of these drugs as i did that and it put me off having the infusion for the first year.

Im on similar for last 23 years. mine is Infliximab ant tnf. or should i say the now cheaper version which is a bio similar called Remsima.

Dont expect miracles like i had but it certainly has helped. I walked in on crutches which id been on for over 13 years and walked out 3 hours later unaided.

good luck and keep us posted.

Tracey46

https://community.versusarthritis.org/discussion/comment/719139#Comment_719139

I know it's nice to talk to people that understand and I have spoken to pals and they are arranging transport on my next appointment now so I'm feeling bit better about it xxx

Tracey46

https://community.versusarthritis.org/discussion/comment/719140#Comment_719140

Thank you so much it's so nice to speak to people that really understand xx

Trish9556

Hi

You have probably read everything on this link from the NHS site but it also explains who can claim for transport costs to and from appointments.

https://www.nhs.uk/nhs-services/hospitals/going-into-hospital/how-to-organise-transport-to-and-from-hospital/

most health authorities run an ambulance car service with people who are usually retired who taxi people to and from appointments free. It's paid by the NHS. Might be worth asking your GP practice about it. My late dad both drove for the service as a retired ambulance officer and later to and from chemo appointments.

Good luck

Trish xx

Tracey46

https://community.versusarthritis.org/discussion/comment/719181#Comment_719181

Thank you so much x