letter regarding a PCN and explaining a related emergency

Unfortunately the below letter was refused and deemed not sufficient to open a review on the case!

 

—-

To whom it may concern,

I’m writing to request a review of the refusal of appeal for case number xxxxx. The following is a copy of the reasons for refusal:

“Adjudicator’s Reasons

The Apellant said that he stopped in an emergency to unblock his catheter. The Authority rejected the representations, pointing out that somebody boarded the vehicle.

The Appellant appealed, he added that he was picking up a specialist carer.

The Appellant did not explain why he could not have found a lawful parking place to clear his catheter. He has not explained the co-incidence that he stopped in an emergency (i.e. no choice as to the location) but at the same time picked up a passenger. When one views the CCTV recording, one can see that the passenger walked towards the Appellant’s vehicle when it pulled up but instead of boarding the vehicle straightaway, especially when there was supposed to be an emergency for which her assistance would have been valuable, she stayed on the pavement attracting the attention of passers  by and engaging in conversation with them. This did not fit with the account.

I am not satisfied that there was an emergency situation. I am refusing the appeal.

Mr A Non

Adjudicator”

 

In response to this explanation I would like to firstly concede that there was not sufficient explanation provided in my appeal. It is a complex situation and a significant amount of explanation is required.

Tetraplegia is a medical term describing the health condition of someone living with paralysis that affects all four limbs. A significantly risky feature of tetraplegia is called autonomic dysreflexia which results in heightened blood pressure occurring very fast which is not self-regulating and can lead to aneurysms and other blood pressure related injuries. Most tetraplegics carry Infedipine, a medication that can be used to regulate BP in these situations to avoid associated health risks (although when taken can result in a side-effect of significant headaches). One of the most common triggers of autonomic dysreflexia is the blocking of indwelling catheters, this can  be due to a buildup of calcium -related sediment within the catheter. Due to the lack of weight-bearing in tetraplegics experiencing paralysis, reduction of bone density via decalcification results in extra sediment being passed in the urine and can result in regular catheter blockages. As stated earlier if these are not rectified quickly via a bladder washout or catheter change, the tetraplegics can experience autonomic dysreflexia and dangerously high blood pressure levels in a very short period of time (a matter of minutes).

The above description of the condition and related side effects should be sufficient to explain the emergency experienced and the need to stop immediately. As I am unable to detect the level of urine inside my bladder, when the catheter blocks it is impossible to detect immediately and only when the pressure inside the bladder results in the triggering of autonomic dysreflexia  manifesting itself in sweating, skin redness and intense migraines am I able to detect that something is wrong.

As a result of my complex medical condition and inability to use any of my limbs I’m attended by two live-in carers 24-hours a day. These carers are trained by a specialist agency to deal with health concerns of a person with a spinal injury. On the day in question I was travelling with a single carer and my wife in my car after having dropped off a carer at her chosen destination and was en route to pick up her replacement. The catheter blockage occurred close to our destination but before we could find a suitable parking place, hence the emergency stop. The carer already inside the vehicle had already started to perform the procedure of a bladder washout and my wife contacted the carer waiting to be picked up to inform her of our location. The carer awaiting pickup walked to our car and waited as we finished the required procedure (which can be safely performed by a single trained person).

It should be understood that although the consequences of mishandling such an emergency situation are great it unfortunately is not an uncommon occurrence and as such it is often rectified in a calm manner by a single individual. Such an event does not necessitate everyone associated behaving in a panicked manner. In fact it is desirable for those nearby to behave normally.

 

Many thanks for your understanding.

Yours sincerely

 

Tom Nabarro

#O2AcademyBrixton #Accessibility #SIA

Email thread regarding wheelchair access policy which mandates that wheelchair users be segregated away from the general public on small raised platforms at gigs.

From: Tom Nabarro

To: Nigel Downs

Subject: Re: Super You + Me Disabled Access Booking

 

Hello Nigel,

I appreciate your reply.

The information you provided about club nights is reassuring although this definitely wasn’t made clear in previous conversations with your colleagues.

I don’t quite agree with your assessment of the health and safety issues with respect to the dangers wheelchair users pose to other customers. I attend many festivals and gigs and enjoy being in the thick of it and have never caused any more harm to others than the next able-bodied person. Whilst I appreciate that my personal experience cannot be grounds for a general health and safety policy I would be interested to hear an explanation of why you have differing policies on club nights and gigs.

With regard to crowd lateral movement, this is obviously an issue with regard to wheelchairs not being able to move sideways and in the case that there is significant crowd movement I would not expect to be at the front middle of the crowd.

Having considered your concerns regarding the above issues I would like to explain why I think it is a mistake to force wheelchair users into segregated platforms away from the general crowd.

Whilst you say that friends are allowed onto the platform, “numbers permitting”, in my experience the platforms are fairly small and it’s unusual to be able to get more than one friend or assistant on the platform. Nonetheless the fact that you have to rely on chance to be able to spend time with your friends at a gig is unacceptable.

Disabled people in general have a hard time overcoming social isolation, it takes a concerted effort to battle against general prejudice and for some the effort is just not worth it. For people who do make the effort to get out and socialise and challenge preconceptions for their own as well as other disabled people’s benefits, it’s a real “kick in the teeth” to be told that they can not be with the general public and enjoy the ambience and that they can only socialise with their “carer” who is usually paid to look after the personal needs of the “client”.

I go to a gig to be with friends, not to hang out with someone I am forced to rely upon 24-7 due to my complex needs.

I would be quite happy not being right at the centre of the dancefloor but being forced onto a raised platform away from the general public is a human rights infringement.

I feel like your policy over health and safety has not been weighed accurately against the well-being of your disabled customers.

This policy is not one that I have encountered other than at the O2 Academy Brixton & Arena and the forum in Camden.

I hope you can consider my arguments and look forward to hearing your reply. In the meantime I will continue to be vocal about these issues on Twitter, other social media and charity channels.

Regards,

— Tom —

From: Nigel Downs

Subject: RE: Super You + Me Disabled Access Booking

 

Dear Tom,

Apologies for the delay in reply.

We believe at the O2 Academy Brixton that we provide an excellent service to our disabled customers. We work closely with Attitude is Everything and believe the way we operate is in line with other large venues.

In relation to allowing wheelchair users on to the main auditorium floor, we also have to take into account the health and safety of all customers. If an incident happened within the crowd and lateral movement occurred, then not only is the wheelchair user at risk, but so would other members of the audience.

We provide a raised platform like the O2 Arena, Wembley Arena or football grounds, but we allow all wheelchair users friends to join them for the best view in the house, numbers permitting. Our disabled policy is no different to any other venue. Wheelchair users at the O2 arena cannot go onto the standing area. In relation to the information we provide to wheelchair customers at the time of booking, we’ll review this to ensure that it is clear.

In relation to club nights, we do allow more flexibility. We allow wheelchairs on to the flat floor but ask that wheelchair users stay to the side for everyone’s safety. I understand that the duty manager on the night did speak to you at her earliest convenience, and ensured you could get on to the auditorium floor.

As a major venue, we do try to ensure as much freedom for our wheelchair users as feasibly possible but these have to be set against the Health and Safety of all customers.

Best Regards,

Nigel Downs | General Manager | O2 Academy Brixton

Subject: Re: Super You + Me Disabled Access Booking

Absolutely please

sorry to hear it was cancelled, do you know why

also I would like to ask how best to register a concern about the disabled access policy at the O2 Academy Brixton

I am a frequent customer of O2 Academy venues and a wheelchair user and have been really disappointed on a number of occasions at Brixton due to being forced to sit in the wheelchair enclosure segregated away from my friends. I don’t tend to go clubbing or to gigs on my own with a single assistant, therefore it’s quite a shock being told I can’t sit with my friends/other people. I haven’t had this experience at any other venue and wonder why it is so strict. Due to these experiences electric Brixton is now my venue of choice and I don’t plan on going to O2 Academy Brixton in the future. I enjoy going to the O2 Arena, O2 Academy Oxford and Bristol and have had very good experiences there.

I have heard that my friend Lucy (copied) has also had negative experiences in relation to being a wheelchair user at the O2\ Academy in Brixton.

I hope these feelings can be related to someone in a position to be able to address them.

Thank you very much for your email

Regards,

— Tom —

#SIAAGM #eyegaze #tobii #assistivetechnology #WilliamsF1 #spinal

Presentation PowerPoint slideshow: 141014_Assistive_Information_Technology 16_10_14

Yesterday I gave the first talk at the spinal injury Association AGM with demonstrations of voice recognition scripting to create an exclusive demonstration-commands-only mode and control my iPhone from my computer ((very crude) scripts available at https://github.com/whIzz2000/natlink-py-scripts). My ongoing appreciation to the authors and maintainers of Natlink Vocola and Unimacro (software that enabled me to do the demo).

Conference link: http://www.spinal.co.uk/news/sia-agm

Well done to everyone involved! great talks from Ruth and Kirsten

Was an interesting day networking, seeing old friends and enjoying the Williams Formula One conference centre and museum, see photos on Flickr.

Was very pleased to meet HRH Princess Anne and talked about Nepal and save the children fund where she helped with my mum and dad back in the 70s.

Going to try to increase my usage of my Tobii PCEye gaze control device alongside voice recognition to improve the effectiveness of my PC usage. spurred on by impressive demonstrations from Hector.

Best

Tom

 

week out of the office

Enjoyed a wonderful week last week only doing a couple of days work away from the office and spending time in London Brighton Portsmouth Winchester visiting some museums, restaurants, Brighton seafront and nights out including Brighton and Brixton. Being looked after well by Jana and Nela whilst having good fun. as usual staying in holiday inns and thinking about my talk this week @ SIA agm at the Williams conference centre near grove. We’ll be talking about assistive technology.

CCMR Presents ‘The State We’re In!’ | Brunel University London

CCMR Presents ‘The State We’re In!’ | Brunel University London.

Great to hear from Will self and Baroness Helena Kennedy about ideas of devolution and reforming the constitution of Parliament. well it ever happen though and will “right” ever be able to triumph over riches? Shame about the demise of “charter 88”.