Pain when travelling with fibro

Saffy

I hate travelling because I have fibromyalgia and it makes my pain worse. Also it leaves me physically and mentally wrecked for days afterwards.
Short local journeys by taxi are not so bad, but I have 2 hospital appointments coming up and am dreading the travelling.
I used to be able to get hospital transport but it has all changed now. Your eligibility is decided by a points system. Apparently I no longer qualify because I can physically get into a car. No consideration of the help I need from someone to do this, or that I need a wheelchair once at the hospital as I can't walk far. Porters are usually too busy and may take an hour to be able to take you.
The first appointment is for a pre surgery assessment, and the 2nd is for the actual surgery as a day case (cataract replacement).
I cannot use public transport. I can't get a lift from anyone. I have nobody to accompany me. The only option is a taxi with a driver who knows nothing about fibro and whose job ends when I get out of his cab.
I also suffer from incontinence so getting from A - B  a.s.a.p. is important to reduce any embarrassment. Both hospitals are just under 20 miles away, and depending on traffic, 40-60 mins.
Any ideas how to make the journeys easier?

Chloe_Scope

Hi @saffy and I'm sorry to hear the hospital have stopped your transport, I imagine this has just made the appointments more stressful. 

Is there no one at all who would be able to drive you there?

Could you take things to distract you in the taxi? It could be a good or to download podcasts beforehand. I hope your appointments both go okay

Saffy

Is there no one at all who would be able to drive you there?

Unfortunately not. Family don't live near enough.
There is a volunteer car service I could book but it's going to cost about £160 and that still leaves the problem of having to get from reception to my appointment. I have very little energy by afternoon so will need help from others.

Chloe_Scope

I understand how difficult that sounds and I'm sorry if my comment didn't come across like that. It must be frustrating that your hospital has stopped offering that service that was vital in this situation. 

Have you asked if the hospital would cover your travel costs?

Saffy

My frustration is partly due to the points system that seems to apply to everything these days. There are no grey areas to allow for common sense to prevail.
If I was travelling on public transport I would be able to claim travel expenses. If that was the case A) I wouldn't claim because I have a free travel pass. I would be fit and able enough to use public transport so wouldn't use a taxi. Which they won't pay for but is my only option. Arrrg!!
To top it all I'm stressed expecting a DWP letter giving me a date for a PIP f2f which I'm dreading. If I don't get a home visit then that's another taxi £80 to the assessment centre.
Also the first hosp appointment is for pre assessment for cataract surgery which will probably need to be postponed as I still have an ongoing eye problem. So I will need the same appointment at a later date, but if I cancel the appointment I'll be taken off the waiting list!!!!!!!!
I sometimes think my head won't take any more (feeling sorry for myself now, boo hoo).
Oh and I bought a box of Cornflakes yesterday, and I don't even like the bloody things.?
Feel free to smile

jaja

Hi there

I have experienced the dread of hospital appointments and how to get there etc.  I will share some of my ideas. Everyone is different so I'm not sure if they will be helpful.

Contacting a disability organisation and finding out what help is available in your area.

Hiring a carer to go with you.

taking non drowsy pain meds before hand

Keeping the brain over active may block out the pain a little

Prep beforehand for afterwards when your symptoms will be worse.

Speak with Social Services to see if help is available. I don't know if they can provide help

Speak with GP - I am unsure if they can help.

It is possible that there will be someone willing to go with you but they are unaware

If you go by cab, book beforehand and discuss your needs. They might be able to send a less aggressive driver or see you to the door

If you can get a disability car scheme they should be more experienced in the needs of those with disabilities

Hire a scooter/wheelchair so you don't have to walk

You could also ask about eligibility for the out of hospital team. I'm unsure what name they go by but they provide help to settle people back at home after a hospital stay. I believe they are sometimes a charity and sometimes Social Services. 

You might consider asking for a copy of the points system used by the hospital to make this decision or asking for the decision to be reviewed.

With regard to incontinence I believe there is NHS help available.  You probably already access to that but just in case.  

I hope it all goes okay.

J

debbiedo49

@Saffy I totally understand where you are coming from. I can’t travel on public transport and I need someone with me by taxi. Recently I had a very important hospital appointment and I was considering not going because of all the stress. In the end I asked my sister whom I am not close to if she could go with me in her car and she agreed. Right up until the last minute I considered not going. My g p surgery used to offer a volunteer driver service which I’ve never used and I can’t see the poster any more so I don’t know if it still exists. I intend to ask my g p practise at some point as this is vital to me getting to any hospital appointments. I know hospitals used to offer it but never asked for myself in the past as I didn’t think I qualified and I had my late father to help me. 
Also on the point of taxis, the hospitals around me are further away and it costs a lot of money to use taxis. My son was going to go with me by taxi if I couldn’t get a lift. Anyway it’s worth looking into on the internet, at the doctors or at the library etc. It’s terrible that I consider it okay to avoid hospital appointments due to my health issues and unnecessary. 

Saffy

Yes and if you cancel, they're not interested in why, it just goes down as a black mark against you. You might even get a lecture on being a time waster!!