Author Topic: Travel funding.  (Read 6866 times)

Gary

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  • Posts: 37
  • Married to Joanne. Have a daughter Jessica.
  • Reason for joining: AL amyloidosis patient
  • Diagnosed: March 2007
Travel funding.
« on: May 03, 2017, 09:15:39 pm »
I was just wondering if all the people that attend the NAC for their reviews fund their own travel to London ? I travel down from Liverpool on the train to attend mine but it costs an absolute fortune. Then I have the cost of the underground on top of this. I know the NAC cannot afford to fund all travel but I think it will get to the point were people cannot attend due to the excessive travel costs. It will be interesting to see other patients thoughts.

Mark McConway

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  • Posts: 73
  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
Re: Travel funding.
« Reply #1 on: May 06, 2017, 06:09:21 am »
Hi Gary,

I was diagnosed in 2011 and have been coming to the NAC from Scotland since then.  At the start, the hospital department that referred me (renal) covered my travel costs from their budget.

I'm not sure if this was discretionary on their part or if it's a general entitlement - and it might be different in England - but certainly worth checking.
Good luck - Mark

Mhelenx

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  • Posts: 24
  • Localised paranasal amyloidosis, systemic AL type
  • Reason for joining: Localised paranasal AL Amyloidosis, patient
  • Diagnosed: 2005
Re: Travel funding.
« Reply #2 on: May 06, 2017, 07:34:22 am »
Hi Gary, like you, I also fund the travel cost for myself and my husband who attends my appointment. I travel from Newcastle so the cost is very expensive. As far as I am aware, it is only people who are receiving benefit qualifies for travel costs. I have read a post from a patient living in Scotland who gets her travel cost paid. I am grateful that at least my accommodation is free. Maybe one day it will be reconsidered to relieve the stress about how we pay to attend.
MhelenX✨

JohnP

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  • Reason for joining: I have AFib Amyloidosis
  • Diagnosed: August 2011
Re: Travel funding.
« Reply #3 on: May 06, 2017, 08:33:16 am »
I travel to the NAC from the Midlands, visiting every 5-6 weeks.
I have always paid for my travel. By purchasing advance tickets and using singles rather than a return you can make some big savings. For example on a recent visit I travelled down First Class for under £20, this gave me access to the First Class lounge (with free drinks and snacks), a free newspaper, and breakfast on the train

I make further savings by buying a Senior Rail Card and by booking trains using Virgin rather than The Trainline since Virgin do not add on a booking fee for any journey.

Advance tickets are limited in number but are made available 12 weeks before any planned journey date

Sadly no savings can be made on The Tube which is one of the world's most expensive underground systems.

TerrySmith

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  • Reason for joining: Recently Diagnosed
  • Diagnosed: 31/10/2016
Re: Travel funding.
« Reply #4 on: May 06, 2017, 09:57:08 am »
Hello Gary,

Might I suggest that as soon as you know the dates for your appointments at the NAC that you book your rail tickets in advance. You'll find that by doing so you'll save a lot of money and the further you can book in advance then the greater the savings. I think that by adopting this policy then you'll find the train fares extremely affordable. You can either book in advance on line or at your local station - you might even find that by booking on line there are additional savings. Incidentally, if you have a railcard of any sort - either a senior railcard (you have to be over 60) or a two-together railcard for instance, then you qualify for a further 34% discount off most rail fares. If you find underground fares expensive you might consider using the bus which is generally more convenient for the NAC. Hope this helps. Best of luck at the NAC.

Best Regards

Terry

georgeturner

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  • Posts: 126
  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Travel funding.
« Reply #5 on: May 06, 2017, 10:25:06 am »
Keep all your receipts and claim from your local health board through your referring doctor. Some health boards pay, others don't.
Slainte Mhath,
George

TonyThackray

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  • Reason for joining: I am a patient
  • Diagnosed: October 2009
Re: Travel funding.
« Reply #6 on: May 06, 2017, 11:46:59 am »
I fund our transport to the NAC because we can afford it ( my wife comes with me). We do this as we assume that this gives the NAC more money for other things or to provide transport to people who cannot afford to fund their own. I am not sure what it costs the NAC to transport people as they have a contract but I assume the cost of a taxi or ambulance would be enormous. If we cannot afford to fund our own transport I am not sure what would happen, especially in this age of funding cuts

The cost of our next return train fare for 2 people is £119. This is from Chester. It has been lower in the past and could be lower now if we picked more inconvenient times or were prepared to change trains. I look at the costs, on various web sites, until they look 'reasonable' but lower fares are not available too early or too late, paying on the day must be dreadful.


Elliecate

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  • Posts: 13
  • Reason for joining: AL amyloidosis patient
  • Diagnosed: September 2014
Re: Travel funding.
« Reply #7 on: May 06, 2017, 01:28:46 pm »
I pay for my own travel, but have managed to reduce costs down significantly by booking tickets 3 months in advance. I use www.nationalrail.co.uk to buy tickets through.

I appreciate if it's a first visit to NAC, then this isn't possible to buy cheaper tickets.  As we are usually given our next appointment when we leave, I start looking 3 months before that appointment. I'm due in late June and have managed to get a single fare from Worcester to Paddington for £6. My daughter's coming down the next day as we're going to have a couple of extra days in London and her fare is the standard £32!  By going back home on a slighty earlier train, I've managed to get us 2 tickets for £6 each. 

The only downside to booking Advance tickets is that the ticket is only valid for that train time you've chosen.  Another tip I've picked up is to use a contactless debit card on the underground, like the Oyster card, and this can reduce ticket costs, as against buying day tickets from the machines.

Hopefully, someone might find this helpful!

Ruth

patpinchin

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Re: Travel funding.
« Reply #8 on: May 07, 2017, 02:23:42 pm »
Hi Gary,

Many practical suggestions below to help you to find a way of less expensive travel to the NAC. We all have our different individual circumstances, personal struggles, trials, tribulations etc...

I have been an NAC patient since 2005. Travel costs from Dorset for my husband and me have risen considerably over the years. I always try to book as much in advance as possible because that seems to be the cheapest way. However being tied to specific times of trains which is cheaper doesn't always work that way. If you are delayed for reasons beyond your control or the opposite happens and you are able to catch an earlier train, than can incur a fine if the inspector happens to be a Jobsworth! Some will accept a reasonable explanation but others won't.

We have come to the conclusion that we try to do the best we can with the price of train travel. As I am so unwell, we have to take a taxi from Waterloo to The Premier Inn, which incurs extra unavoidable expense.

We are very grateful that our necessary overnight stay is funded by the NHS, because the NAC is a research centre too. We need the NAC as much as the NAC needs patients to further its world class research, which benefits all NAC patients and the amyloidosis community worldwide.  We also greatly appreciate that with a rare disease I am an NHS patient at a World Centre of Excellence for amyloidosis. Many countries do not have the outstanding unparalleled specialist world class expertise which we have in the U.K. Everything for amyloidosis is free at the point of delivery to U.K. NAC patients. We, in addition to the Dutch, are the only amyloidosis patients worldwide, who are diagnostically tested and monitored with the SAP scan. The SAP scan is just one of the range of tests of thorough tests the NAC provides for patients. As we know, it is a very important part,  because of the amount of information it provides for our Drs. I understand that the cost for international patients to have the 2/3 days of testing at the NAC can cost as much as £4-6,000. That might astonish you? We don't have to pay a penny!

Although it has become increasingly difficult for me to travel annually to the NAC because of rapidly declining health, I know I have to do it, because it is only at the NAC that there is are two very special Drs who understand my condition and what I am going through with my unprecedented very distressing symptoms. They both have taken a particular interest in my manifestation of AL amyloidosis. Their support, care, compassion and outstanding expertise are of huge importance to me. I am totally dependant on them in my hope one day to get a little better. So the cost of travel is a necessary part of what I have to do. Without the NAC there would be no hope for me. I think many NAC patients feel the same.

I hope your travel difficulties can be resolved so that you can continue to have access to only specialist expertise available in the U.K. for every type of amyloidosis. To me, the NAC feels like a private clinic because of the outstanding quality of care and specialist expertise and personal attention every NAC patient receives.

One last thing, every member of the NAC team is extremely nice in so many ways, too numerous to mention. I have frequently described them elsewhere so as to leave no-one in any doubt about the high esteem I have for everyone at the NAC. I often ask myself, where would I be without them?  :) :)
Pat

Miriam Vered

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Re: Travel funding.
« Reply #9 on: May 08, 2017, 10:12:04 am »
Hi all,



I recommend this very informative link: http://www.nhs.uk/NHSEngland/Healthcosts/Pages/Travelcosts.aspx


Also, the NAC can provide NHS transport for those patients who require it for medical reasons.


nvroberts

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  • Reason for joining: I have AL amyloidosis and frecently started kidney dialysis
  • Diagnosed: November 2014
Re: Travel funding.
« Reply #10 on: August 23, 2017, 05:14:38 am »
I guess I am lucky, as I only have to travel to the N.A.C. from the Midlands. We drive down; the N.A.C. is not far from the end of the M1 so the journey is usually easy. The cost of petrol is manageable, in our 65mpg Fiat. The only thing that irritates me is the £15 parking fee at the Premier Inn (about which I have no other complaints whatsoever).  Once my wife could not join me, so I had to use the train as I cannot attempt to drive that far. It was fine, but took a lot of research to find the best route and best fare. JohnP's advice regarding rail fares is very useful (see other post).