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(UK) Accessing Patient Transport: woman with severe ME/very severe ME describes her experiences

Tom Kindlon

Senior Member
This is from the winter 2014 newsletter of the 25% ME Group:
http://25megroup.org/Information/Newsletter/issue 38/Issue 38 .pdf
I put it aside at the time to wait until the newsletter went online and it got lost in my bundle of things to do.


Accessing Patient Transport
by L

Patient transport is an important issues that hasn’t previously featured in the QuarterLy .

Thanks to L for making the effort to provide feedback about the her struggle to secure the type of transport service that is essential for a very severely affected M.E. patient to access vital services.

Hopefully this will provide useful pointers for other members and help avoid others having to endure a similar ordeal. ...

I have lived with M.E. for thirty years and have been receiving domiciliary dental care from the Primary Dental Care Service as I’m no longer able to attend an NHS dental surgery. But to keep pain-free I needed more complex treatment than could be carried out within a home environment. However, there was no success by the Clinical Lead at the Primary Dental Care Service in finding a suitable dental hospital, in London, that could offer me treatment - purely because I am a stretcher patient! Believe it or not there is no access at any hospital in Lon-don, so I am told, that offers dental care unless you can walk or are in a wheelchair (nor would there be any bed/stretcher available to lay on whilst awaiting an ambulance for the return journey.) Amazing! Therefore, the only solution was for me to visit the Special Needs Dental Clinic near to my home where the same clinicians who provided my domiciliary care could carry out more sophisticated treatment. But how to get there and back was to be a major problem.

To enable this to happen I needed a stretcher ambulance that would wait at the Clinic with me whilst treatment was carried out, and then return me home immediately afterwards. An NHS ambulance would be UNABLE to wait for me for an immediate return journey as they are on tight time-schedules and required to leave patients at clinics/hospitals (perhaps for several hours) in order to transport other patients. This didn’t support my present health requirements as I am able to sit up-right in a manual wheelchair for only short/immediate transfers.

With every telephone call I made/or email that I sent, and there were many, no-one seemed to want to be bothered to try and make things happen for me, from NHS England downwards and for well over a year I was bounced around the system and it appeared, from my perspective at least, that I had tapped into what can only be described as an NHS ‘bureaucratic shambles’. I felt as if I was living on the moon, not in a major city. Be-cause my transport needs didn’t fall within the usual guidelines and because no-one was prepared to think outside of the box to make things happen, nothing could be achieved. What I was requesting wasn’t exactly rocket science but all I encountered was ineptitude on every level. Even the Primary Care Dental Service and the Clinical Commissioning Group were totally unaware of their obligatory duty of care to me and I was told by everyone I encountered that I was asking for the impossible.

But what spurred me on was the thought of experiencing a humdinger of a toothache – with no-one willing to help me! It was the stuff of nightmares and I knew I had to sort this issue out for myself or it wouldn’t get sorted. Many able-bodied people would, I am sure, be surprised at the hoops of indignities we have to jump through, as severely disabled people, pleading to have our voices heard. I wanted, needed and was determined, to be afforded the same NHS emergency treatment as every other UK citizen who has a toothache. To be seen by a NHS dentist who could, if necessary, carry out an extraction; a procedure that can’t be carried out in a home setting.

I made several calls to private ambulance companies but there was no way I could afford their charges. Eventually, way down the list, I tried St. John Ambulance. Eure-ka!! I had hit the jackpot. They could take me from my home on a stretcher to a dental facility, transfer me to a wheelchair and take me immediately to reclining dental chair; St. John Ambulance WOULD THEN WAIT for me and I would be immediately taken home.

I was advised by St. John’s Ambulance that they are used daily as a back-up service to the NHS so what I was re-questing would not be, for them, an unusual occurrence, and that their charge for transporting me would be no more expensive than that of an ‘ordinary’ ambulance. So, why was the NHS England administration as well as dental professionals at local level not aware this was an option?? I really don’t know.

And there was more yet to come. Submitting all the necessary details to the Primary Care Dental Trust I asked if they would apply for funding on my behalf to the London Clinical Commissioning Group so that I could be trans-ported to the dental clinic by St. John’s Ambulance who would be able to support all my health needs. But I was firmly told that the dental service are unable to request such funding. But this is incorrect. I did some research and discovered that on the ‘Individual Funding Request Application Form’ used by medical practitioners for funding requests, it is clearly stated that funding CAN be applied for by a Dental Practitioner. But the professionals were unaware of this fact.

Unsurprisingly, my health was suffering and I was paying a high price for not surrendering to the status quo. But I really couldn’t consider giving up as being an option, as no-one else was prepared to help me and the mere thought of a ‘toothache nightmare’ really stressed me out.

Eventually, totally shattered both physically and emotionally, I contacted my local M.P who was very helpful indeed and without whom I’m sure I would still be battling.

So, the bottom line is:
Via my M.P I have received written confirmation from Dr. Anne Rainsberry, Regional Director for London, NHS England, as follows:

 Transport arrangements and payment mechanism will run smoothly for the future.

 Central London Community Healthcare will be confirming the process details with me.

 NHS England will review patient pathways and take steps to make improvements as necessary.

 Service Providers will be made fully aware of patient pathways in relation to treatment needs and other needs such as transport so that they are able to refer and signpost patients appropriately.

Together with her apology, Dr. Rainsberry also gave her assurance that improvements in the service provision will be made.

As well as all of the above now being implemented in the London area, the same criteria should automatically apply to the rest of England. All stretcher patients in a similar situation to the one I found myself in, where-ever they live in the country, should be offered similar facilities, as set out above, to support their needs. If not, demand them. It is your right.

I wish everyone improved health.
Best wishes,

Invisible Woman

Senior Member
Wow. What a battle! ...and how unnecessary that this very ill lady has been put through it and undoubtedly had her condition made worse.

How typical of the jobsworth society we live in. Not one person prepared to think outside the box or put themselves out a little to help someone in need. Even when that is their job.

L (if you read this) your perseverance & strength of character are remarkable. I hope your treatment went well and that your ME hasn't been permanently made worse by this ordeal by bureaucracy.

I am sure we will all benefit from your Herculean effort.

Well done also to your MP. It might be nice to know their name so their contribution can be publicly recognized.