Author Topic: Bath Centre for Pain Services  (Read 13403 times)

starsmurf

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Bath Centre for Pain Services
« on: 06 Aug 2013 11:59AM »
Has anyone on here been to the Bath Centre for Pain Services?

I've been referred for a three-week residential course to help my very severe pain that can't be controlled by any drugs they'll give me.  Bath is a long way from home and I am concerned about many details but the one that blows my mind is the accommodation.  I was told by my doctor that they provide accommodation so it wasn't a problem or an expense.

When I got home, I looked up the website to find out more.  I clicked on the accommodation link and found this statement (underlining mine):

"Group members are accommodated in Bath Heights.  These are penthouse flats that overlook the city of Bath.  There are 8 shallow carpeted steps leading up to the lift.  The flats are not adapted for disabled people, indiviudal needs can be addressed before programme by the clinical team."

Who on earth arranged accommodation for people with chronic pain in a building that isn't accessible and didn't adapt the property?  Isn't that against the Disability Discrimination Act?  What are disabled people supposed to do?  It does create a problem for me as I've no idea how I could possibly cope in that situation.

If anyone has been there, I'd love to know more about the course.
« Last Edit: 06 Aug 2013 12:01PM by starsmurf »
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Becca7

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Re: Bath Centre for Pain Services
« Reply #1 on: 06 Aug 2013 12:15PM »
First *I have not been there*.

**But** I am not allowed the alternative in Wales because it is delibrately not for people who are disabled in anyway other than with pain; so no-one who cannot manage stairs, no-one with epilepsy or mental health problems (those were why I was told no - there are others as well).

Yes, really. My GP was told that was how they taught people to manage their pain and only pain. Possibly this is the same. I suspect like me for my referral I had to go and be assessed *first* (and pay for my accommodation - that took 7 hours each way for me to get to) and was told no due to my other conditions that excluded me and my inability to manage any stairs. I suggest you get your GP or whoever did the referral to contact them first about your needs and explain; as I was devestated when I was rejected for the course in Wales.

Honestly I hope that will not happen to you and you can go and get help and it will make a major difference to your life, but I wanted to explain what happened to me just in case so you could be prepared.

starsmurf

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Re: Bath Centre for Pain Services
« Reply #2 on: 06 Aug 2013 08:19PM »
Hi Becca,

Thanks for replying.  I'm so sorry about what happened to you >hugs<.  I don't know your level of disability but Bath offer a course for people who are unable to care for themselves, if that would be of interest.  It involves admission to a unit in the hospital that runs the service (the Royal National Hospital for Rheumatic Diseases) for four weeks (you can go home at weekends if you're close by).  As my pain is made worse by heat and I use very cold ice-packs all night, a hospital admission wouldn't suit me.

You're not telling me anything I didn't already suspect about the assessment.  I think I may be turned down too.  I find it appalling that a service for people with severe pain is not adapted for people with disabilities.  It should be illegal too, why doesn't the DDA apply to them?
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neurochick

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Re: Bath Centre for Pain Services
« Reply #3 on: 06 Aug 2013 11:09PM »
The Bath Pain Management Course is an inpatient stay as you know.  The hospital inpatient accommodation in the hospital ward is suitable for wheelchair users so that is the reasonable adjustment if you can't access the flats.  In fact when I went to be assessed, that was the only option - they didn't offer external flat based accommodation.

The hospital itself is all wheelchair accessible although it is a very old building.  You do have to go through various advance assessments to see whether or not you are a suitable candidate for the course.  If you have to come from a distance, it is entirely possible to email or call in advance and arrange for the assessments all to be done on the same day.  If you don't do that, they will typically allocate appointments on different days.  I had two, two hour assessments and had to fly to and from Bristol airport with my partner then hire a car to get to Bath so i emailed in advance with my travel plans and they simply arranged them for the same day.  It was all very straightforward and the waiting time was short. 

The course requires you to participate in continuous activities all day, every day, Monday to Friday with homework to do after the hospital working day ends.  It is very intensive - that is why it is supposed to be effective.  You may well find that it is less tiring to be based in the hospital rather than having to get to and from the hospital every day from an apartment.  Bath has some extremely steep hills and a lot of cobbled streets so its not altogether wheelchair friendly.  The course and the centre is exclusively designed to teach chronic pain management techniques - it is not set up to deal with any other disabilities or health conditions.

I wasn't a suitable candidate - I have a rare presentation of my condition with severe movement disorders which prevent me from carrying out virtually all of the physiotherapy and OT activities which make up the bulk of the Bath inpatient activity.  Not only that, they told me that my pain management techniques were already better than most of the people who had completed the course which was wholly depressing news at the time.  I have to be honest and say that for my diagnosis, although they claim to be the UK centre of excellence, they are just not, they have no expert or experienced consultants and are at least 15 years behind The Netherlands (I've also been there) which is at the global cutting edge of treating, researching and managing the condition.  The Netherlands have true experts who make the staff at Bath look like bumbling amateurs.  This may not be the case for other pain conditions or for more typical presentations of the condition I have.

I hope that is so help.  I really wouldn't discount a referral just because you can't stay in a flat.  It is possible you will get an enormous amount of benefit from the inpatient stay and the course even if you have to make do and stay on the ward.  At least go for the assessment appointments and see what they feel they can do for you.  It would be a shame to turn down an opportunity that could make a real difference to how you cope with your pain and your quality of life.

devine63

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Re: Bath Centre for Pain Services
« Reply #4 on: 07 Aug 2013 12:37AM »
Hi Starsmurf

the Equality Act 2010 (which replaced the Disability Discrimination Act) still incorporates the requirement for service providers to anticipate the needs of disabled people at large, in addition to making reasonable adjustments to individuals' needs on request, so yes, they should have proper arrangements in place.   

I hope you are able to get some help - but might be better to ask Neurochick to tell you more about The Netherlands!
regards, Deb

neurochick

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Re: Bath Centre for Pain Services
« Reply #5 on: 07 Aug 2013 01:18AM »
To be fair to the course at the Min in Bath, it is a hospital inpatient stay and they have hospital wards where patients are accommodated free of charge with meals whilst they are there.  These are obviously fully wheelchair accessible so they have anticipated and made plenty of fully accessible provision for wheelchair users.  It would clearly be difficult and potentially a waste of money and resources for the NHS to rent regular flats, to have to fully adapt them and then at the end of the leases to either leave all that kit behind or more likely to have to pay to rip it out and reinstate the flat(s) to the landlords satisfaction.

I suspect the flats are a solution that is being used to meet the increased demand for the clinic's services as a top up for the necessarily limited number of beds available on the wards ( the Min is an old, non-expandable building) not necessarily as their first choice of how people would be accommodated.  That way the waiting times are kept down whilst more patients can be treated at any given time.  You need to bear in mind that Bath is a UK centre which serves inpatients from Scotland as well as England as there is no equivalent service in Scotland.

Sadly, before anyone gets excited about the Netherlands, its pretty much impossible to go there for treatment - there is no mechanism for cross charging between the NHS and their medical system and it wasn't possible to go privately either, again they have no means to charge private patients.  I suspect the NHS would expect folk here to be grateful for the "centre of excellence" they have got in Bath and would not see why anyone would want to access new fangled healthcare abroad! I was lucky the professor who saw me didn't charge me. Their facilities, knowledge and treatment options are absolutely cutting edge and the UK is so, so far behind that it is a travesty.  As I said, all that applies to the particular condition I have plus my symptom presentation falls into a recognised, rare sub-set of only 5% of patients.  Its entirely possible that the treatment offered at Bath is perfectly OK for other chronic pain conditions. 


Fizzbw

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Re: Bath Centre for Pain Services
« Reply #6 on: 07 Aug 2013 12:07PM »
I've been on the Welsh one, and am seeing them still as an out patient. All the people on my course had chronic pain and no real mobility issues. They had Fibro, nerve adhesions, back pain and I was odd man out with chronic intractable facial pain. They didnt know how useful the course would be for me but it was.

They are not miracle workers. But they try really hard and do get good results. They do do graded exersise but you are allowed to do it at your pace. It's exhausting and mind boggling but very very useful if you commit.

The effect did wear off for me, my pain just keeps ratcheting upward through the years but luckily I live two villages over from the welsh centre and they see me as an outpatient. They've altered my medication but as much as anything it's been having someone to talk to who can understand, motivate and encourage you.

I would always encourage people to do the course, but I don't know about the qualification or suitability issues.

Fx

starsmurf

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Re: Bath Centre for Pain Services
« Reply #7 on: 07 Aug 2013 06:58PM »
Thank you for your replies, especially neurochick and fizzbw.  It's interesting that you both mention Bath and the Welsh courses as not really dealing with people who have mobility issues.  I know that my referral isn't for the course that involves hospital admission, as I was told the course was 3 weeks long and the course with hospital admission lasts 4 weeks.

I'll go for my assessment  and if I get the chance to do the course, I'll take it but I am concerned that the pain specialist who has referred me hasn't thought about issues like sleep or how activity affects my disease.  I also have no idea how I'll be able to make it to Bath for an assessment, as I need to have a very cold freezer filled with ice packs.  I've found one expensive guest house that has adaptations for those with mobility issues but they may not be able to take a freezer due to fire regulations.  Due my need for -18C ice-packs and the response of my pain to heat, a hospital admission is not really possible.
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neurochick

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Re: Bath Centre for Pain Services
« Reply #8 on: 08 Aug 2013 01:25AM »
I just wanted to clarify that I wasn't saying Bath was poorly set up for those with mobility issues - I was actually saying exactly the opposite.  It is set up well for people with mobility issues.  It might be that the set up doesn't suit you and the very specific ways you currently manage your pain but it is fully accessible to people in wheelchairs or with other mobility problems.  There are lots of people attend who are not mobile.  I am a wheelchair user and have been since before I went to Bath.

The course length isn't cast in stone either.  They only have you there for as long as they think you need to be there. It can be as short as two weeks, inpatient or otherwise.  That is something that is dealt with via the assessment process and then depending on the progress you make.

devine63

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Re: Bath Centre for Pain Services
« Reply #9 on: 08 Aug 2013 01:53AM »
Just for info - I've been pleasantly surprised to find that many Travelodges and Premier Inns have some accessible rooms (though they do vary somewhat in what they mean by accessibility, so check).
regards, Deb

starsmurf

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Re: Bath Centre for Pain Services
« Reply #10 on: 08 Aug 2013 01:16PM »
Just for info - I've been pleasantly surprised to find that many Travelodges and Premier Inns have some accessible rooms (though they do vary somewhat in what they mean by accessibility, so check).
regards, Deb

Thanks for the suggestion, Deb.  They're great and I've stayed there before I started needing the ice-packs.  Unfortunately, I doubt bringing my own freezer would be permitted for fire safety reasons.  I can't use a communal freezer, as I need it to be very close by and I need the freezer extremely cold (at least -30C).

I just wanted to clarify that I wasn't saying Bath was poorly set up for those with mobility issues - I was actually saying exactly the opposite.  It is set up well for people with mobility issues.  It might be that the set up doesn't suit you and the very specific ways you currently manage your pain but it is fully accessible to people in wheelchairs or with other mobility problems.  There are lots of people attend who are not mobile.  I am a wheelchair user and have been since before I went to Bath.

The course length isn't cast in stone either.  They only have you there for as long as they think you need to be there. It can be as short as two weeks, inpatient or otherwise.  That is something that is dealt with via the assessment process and then depending on the progress you make.

Thanks, neurochick.  I think they've changed the system, as it's a fixed period now, perhaps as a result of the demand for the course.  The course is three weeks for those staying in the flats and four weeks for those in hospital.  As it is mainly group-based, there is less flexability.  You may be able to "graduate" early but it would be difficult to stay for a longer period.

In a few cases they will do an individual admission but that obviously takes away any social aspect of the course.
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Fizzbw

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Re: Bath Centre for Pain Services
« Reply #11 on: 08 Aug 2013 07:23PM »
Yes, and the social aspect is a very important part of the process.

Fx

devine63

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Re: Bath Centre for Pain Services
« Reply #12 on: 09 Aug 2013 12:09AM »
Hi Starsmurf

how on earth are you using chillpacks that cold with out burning your skin?
It would be worth asking any hotel about the freezer - for a three week booking, renting one would probably be worthwhile...
regards, Deb

starsmurf

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Re: Bath Centre for Pain Services
« Reply #13 on: 09 Aug 2013 11:15AM »
Hi Starsmurf

how on earth are you using chillpacks that cold with out burning your skin?
It would be worth asking any hotel about the freezer - for a three week booking, renting one would probably be worthwhile...
regards, Deb

Hi Deb,

Unfortunately, I am burning my skin.  It's actually turning black but my consultant on my condition (Primary Erythromelalgia) admits that without pain relief, I've no option.  The pain feels like being burnt with lava and stabbed with thousands of needles that inject that lava into you.

I've emailed a couple of hotels to see if renting a freezer is an option, I'll let you know if your suggestion bears fruit (well, ice-packs).

Thanks again to everyone who has replied to this, it's always good to chat to those who have some experience or have good suggestions.

If you endure severe pain, this article might interest you http://online.wsj.com/article/SB10001424127887324809004578635783597536770.html?mod=wsj_valettop_email
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starsmurf

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Re: Bath Centre for Pain Services
« Reply #14 on: 09 Aug 2013 11:18AM »
Yes, and the social aspect is a very important part of the process.

Fx

Exactly Fizzbw.  I wonder how many people find that their pain increases when they go home, even though they're less active, simply because the social aspect of the course was helping them.
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