I'm having to go to RBH fairly frequently and am finding getting there an increasing struggle as breathing worsens (on 6lpm oxygen ambulatory). Ist 15 mile car journey, then train 50 miles, then taxi from St Pancras to Hospital. Often return journey at rush hour. RBH nurses say I should ask for transport.
Should I ask for patient transport to... - British Lung Foun...
Thank you all for your answers. I suppose my concern is that I know any medication I am going to get as a result of these investigations is quite expensive. I also have had a lot of time and expertise invested in me, it just seems wrong to be racking up more expense for the NHS if I can manage to get there under my own steam. Also, I suppose I have valued my independence up to now - it feel difficult to relinquish it.
Sounds like you would never ever waste a penny of NHS - AND you deserve to get all the help you need, that's what the NHS is for - and we all pay towards it.
I have several prescriptions and have had some tests - even now, my state pension is taxed, so figure that the taxes I have paid over the years will more than cover the expense NHS incurs through my COPD... if smoking has caused it, then the massive taxes on them over the years have contributed even more. Independence is important for you, it's a case of weighing up what is really in your best interest - what would your advice be to your best pal in similar situation ? I ask that as many of us treat friends and family much better than we treat ourselves
I know exactly where you are coming from! I had a meeting with my consultant the day before yesterday. While most of my care is dealt with at my local hospital or by nurse visits at home, consultant appointments are at a regional hospital a fair distance away. On Monday my journey went: taxi to bus, first bus 45 minutes, 10 minutes walk, second bus twenty five minutes (thankfully that bus dropped me right at entrance to hospital). Like most copd'ers, I set out much earlier than needed to ensure punctuality.
I don't mind the long journey as I have an excellent and caring consultant who takes time to really listen and discuss. On this occasion he gave me an hour of his time - not all consultants do that. Like you I am on oxygen - 2LPM for sleep and light activity, but for walking out and about and more strenuous activities I use 5 or 6 LPM - still though on Monday my feet and ankles had ballooned by journey's end.
My friends, family, GP all press upon me that there is transport available, but I treasure my independence. I am in my fifties and already at 29%, so I am sure I will arrive at the point some day in the future where I simply have to succumb In addition to the exertions of our journey there is also the expense of course. Thankfully I do have DLA which mostly gets used for taxis and transport anyway. I am aware that one can claim back travel expenses but after the exhausting journey it seems too much hassle - all I have energy for before returning home is ' a tea and a wee' Incidentally, the one person that does approve my independent journeying is my consultant :).
Only you will know when the time has come for hospital transport Maggie, but well done you for keeping your independence so far ! best wishes Parvati.
Hi Maggie, I have been travelling to RB from Liverpool for 4 years and on oxygen for last 3. Since being on O2 If I am going to clinic for the day my son comes with me and we go by train to Euston and then taxi to the hospital. If he couldnt come with me I used to turn my oxygen right down and struggle to the hospital by train alone with assistance at each station. I used the hospital transport once because I was told I shouldn't be travelling on public transport managing oxygen so I used their voluntary transport last October for a clinic appt and like you couldn't stop worrying about cost to NHS.. To be honest it was a nightmare, I missed appts which then meant me having to go back. which also meant exra cost. So it was back to the train for me. For my last stay in February my son couldn't take me so they sent an ambulance which I was dreading for cost and independance factors and to be really honest a bit of vanity. the two men each way were great no problems with timing at all. I am on 6-8L 24/7.
I lost my job in December and was able to get the train fare for January refunded. I always had a pre payment card for my prescriptions it saved me a fortune. Use the transport if you need it. Also before I was on O2 and could travel on own but struggled I sometimes used coach from Liverpool to Victoria then taxi, long journey but OK. Like you i have fiercly hung on to my independance and struggled to the point where the doctors have chided me. Each little loss has been devastating with acknowledgement that I am getting worse but you must Use the transport when you need it. If you do use trains etc book assistance at the stations, it really does help.