Not a hidden disability

I heard last week that my application for a Blue Badge had been declined because Parkinson’s together with its associative symptoms was not considered by the council to be a ‘hidden disability’. I experience quite significant stress and anxiety centred around parking and had corroborative information from both my Neurologist and GP supporting my application.
I don’t really know what to do now . Lockdown has sadly meant we are all isolated to some extent but it will mean that my social isolation issues will continue forever as my Parkinson’s symptoms are exacerbated by stress and anxiety issues so I tend to decline most invitations.
Please can someone tell me if I should just let this go, and manage as best I can or let me know f there is something I can do. Many thanks and stay safe everyone Katie x

I’m sorry that you’ve been turned down for a Blue Badge.

I have to admit, however, that I can’t work out how you think you’d benefit from having one. If you have anxiety parking, how would having a blue badge help? It might be that the council officials dealing with your application are as slow on the uptake as I am, and need you to explain.

You can appeal against refusal of a blue badge. CAB advice here.

I obviously did give much more information on my application than in this post, and perhaps you are not aware of the change in regulation. It is more about the knowledge of, and possible accessibility to a larger space which would enable me to open the door wide to get in and out as I have been frequently “trapped” and the associated stress and anxiety exacerbates my PD symptoms. See below

Transport Secretary Grant Shapps said: We know that for some people,the possibility of not being able to find a parking space can make even leaving the house a challenge which is why the Blue Badge is so important. The scheme which is already a lifeline for so many disabled people will make a huge difference to those with non-visible conditions such as Parkinson’s.
Regards Katie

No I wasn’t aware of the change in regs, and interestingly, the CAB does not appear to have updated its site either. I wonder how up to date the council officials dealing with your application were. Definitely worth appealing.

Hi Kate,

Personally, I would give serious consideration to submitting an appeal. Those of us with Parkinson’s Disease obviously have the condition in common but there are also other factors in our lives that impact on our health and wellbeing that we do not have in common. We are also all at different stages of the condition and have varying symptom sets and varying degrees of severity of different symptoms. In discussion with health professionals who know us, I firmly believe that we are individually best placed to say what adjustments we feel will meet our specific needs.

You applied for a blue badge because you felt it would make your life easier and medical professionals supported you with your request. Unless your situation has changed, I think it would be worth at least trying one more time.

The article below is from the .gov.uk website and unless I am being completely dozey, it definitely states that Parkinson’s is considered to be an invisible disability and one of the groups for whom the adjustments to the rules regarding blue badges were made . In addition, anxiety is definitely included as a condition which can be supported by the provision of a blue badge.

I have a friend who worked in a council’s blue badge department for a while and to put it mildly, she was horrified by the arbitrary decision making process with decisions sometimes being made by individuals who were not as informed as they should have been about various legislation and individual health conditions .

Have you tried contacting the helpline to discuss this? They may be able to give you informed advice on your eligibility and help you to identify anything that you may have missed from your initial application.

Good luck - take care in these difficult times. Jx

Sorry - wrote my rather long ramble before your second posts came up and also neglected to check which laws apply in which parts of the UK :frowning: - still, it was an interesting subject to read around and I now definitely think you should appeal. Jx

Hi Jackson,
Thank you for your response. It was such a long and involved process to begin with I am a little reluctant to appeal, but I will try and see what happens. Regards Katie

You might be able to get help from your local Age UK (if you are over 50) . Sometimes it helps to have an organisation backing you up. Food luck

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Good Morning Welsh Lady
I had Parkinson’s Uk Advisor help fill out application for my Husband. She was visiting to fill out Attendance allowance form and gave me advice on what to put down. They know exactly what the council is looking for. I would suggest contacting your advisor and ask for help.
Hope you are managing ok
Heather

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Welsh lady

Have a read of the Blue Badge process for Wales. Your latest PIP assessment may gain you automatic approval.
For PWP the key points I stressed on my last 3 appproved applications were:

  1. I only venture out when my meds are working and my disabilities are mostly invisible.
  2. While I am out meds often wear off before I can take more. This is where a blue badge would really assist me.
  3. While I am out, my car is my refuge, a safe haven where I can shake uncontrollably in relative privacy while waiting for my next meds timing and then for them to work.
  4. Having my car close by and in a space where I know the doors won’t be blocked by other cars in a narrow space would be an enormous relief, when my mobility issues are at their worst and certainly not invisible.

K

Hi Welshlady my blue badge had ran out and i was due for a new one, when th form application arriverd, on reading though it was all about har far you can walk, or if you get out of breath ect. Nothing to do with any disabilty of “parkinson’s” So I filled in the form best i could. Then aection 4/5 I explained what Parkinson’s was all about. eg Stiffnes if sitting to long, yes i can walk in fact quite well SOMTIMES but sometimes when i walk I am in pain, when i first get out the car i hve to do it very slow to get my joints moving, This is all part of "Parkinson’s feeling better after I had educated the people who issue the Blue Badge’s I said to-myself well if they don’t issue me one now then I have done all I can do. This is another example of people/council/and others who seem to think PD is all about having a tremor#

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I do hope you get another badge. The acceptance criteria does seem to vary from council to council, I have appealed their decision but I am not holding out much hope.

Thanks Welshlady i have got my new badge.

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absolutely absurd,i would like to know what level of seniority does the person hold who has judge and jury declined your application whilst it is obvious different councils have different guidlines parkinsons has no boundries and which ever area you live parkinsons is parkinsons and is far more than just a tremor

Well said @jimbo2009. I filled in my application form for a blue badge today. As you said Parkinson’s knows no boundaries and isn’t age specific.

Here below is the reply following my appeal. I would be grateful if anyone could give me advice on wording to use in my next application.

We have declined your application under the hidden disability criteria as Parkinson’s affects the body in a physical way, causing tremors, painful cramping and stiffness as stated on your application. Although it also causes you stress and anxiety, Parkinson’s disease, in itself, would be classed as a physical disability
Due to this, we would suggest applying under the physical, walking disability criteria, as this is for conditions which cause difficulty walking due to pain, breathlessness, the time it takes etc. You will be able to add additional information to explain that you also experience stress and anxiety which exacerbates your symptoms, however we would advise that you complete the physical application.
When completing the Eligibility Check stage of the application, please select the following options:
“Do you receive any of these benefits?”

None of these benefits”

“What’s the main reason you need a Blue Badge?

For physical walking disabilities, select:

Have a permanent disability and cannot walk or find walking very difficult”

Once we have received the application we will assess it accordingly.

Best wishes, Katie x

Hi Katie,

I can sense your frustration with this issue and I don’t blame you at all. I’m really sorry but I don’t have any practical advice because I haven’t gone through this process yet but your issue seems to be related to the total lack of public/government understanding about Parkinson’s Disease which I find so incredibly frustrating and almost discriminatory in its impact. Having Parkinson’s disease is an uphill battle on so many levels.

I looked again at the legislation and am embarrassed to admit that I’m a little bit confused as to which legislation applies to which part of the UK because the gov.Wales website refers to a document written in 2017 which does not include the recent amendments made by gov.UK covering blue badge eligibility in England.

I don’t know how you get past a council that doesn’t understand Parkinson’s Disease and its variability and wide range of symptoms but hopefully, there will be somebody on the forum who has gone through this process in Wales and can therefore offer practical help. This is just a thought, and may get you nowhere, but have you tried contacting your local councillor or even your MP? Councils seem to have forgotten that the current crisis is impacting greatly on people with any number of health conditions and they need reminding; access to easy parking for some people with Parkinson’s who can still drive could be paramount in terms of getting food and essential supplies and staying well. This pandemic is going nowhere in a hurry and funding for various services seems likey to decrease so we all need support and adjustments that will enable us to manage as independently as we can in the long run; this does seem relevant to your situation.

On a personal note, I recently retired on medical grounds after a long and utterly soul destroying battle during which I was advised that my problems were ‘just’ related to nerves and was also told that I didn’t look like I needed a wheelchair in response to a conversation about dystonia in my feet - an unsympathetic manager had reported to HR that I had said I couldn’t walk! It was totally untrue and humiliating beyond belief and nobody would tell me who had recounted this information so I had no right of reply to them. I was also regularly advised that I looked ‘very well’ and that it had been noted that I appeared to continue to be able to have a social life, though why this was relevant, I still don’t know. I would have given up but that would ultimately have lead to queries around capability and I have to pay the mortgage and feed myself so I gave up my right to have any dignity or self-respect and crawled through every hoop that was put in my way.

It is appalling to be made to feel so bad and have to push so hard to access a reasonable and available change or adjustment that could ease the challenge of living with Parkinson’s in any way.

I wish you well with this and would be interested to hear how you get on.

Take care. Jx

In case you haven’t seen my reply earlier the the key points I stressed on my last 3 appproved applications were:

  1. I only venture out when my meds are working and my disabilities are mostly invisible.
  2. While I am out meds often wear off before I can take more. This is where a blue badge would really assist me.
  3. While I am out, my car is my refuge, a safe haven where I can shake uncontrollably in relative privacy while waiting for my next meds timing and then for them to work.
  4. Having my car close by and in a space where I know the doors won’t be blocked by other cars in a narrow space would be an enormous relief, when my mobility issues are at their worst and certainly not invisible.

You have to get across the way our symptoms can be invisible while out meds are working, but very visible when they inevitably wear off, was key. Plus the fact that sometimes we can walk 1km and then struggle to to put one foot in front of the other on the same trip away from home.

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Thank you so much Kendo. I’m still wondering whether to pursue this as it has been such a prolonged process. Thank you also for the points you included which could have been written specifically for me! Hope you remain well. Katie

15 years since diagnosis, after taking part in the GDNF surgery and drug trial and most recently DBS, I’m taking less medications than I did after 5 years. I can still play golf with a buggy and drive when my meds are ‘ON’

However, I’m now very attuned to the signs of my meds wearing OFF and the need to park up or get back to my car within 30 minutes. For that reason alone I always travel with another driver if on a Motorway in case of traffic jams.

If I didn’t have my blue badge I would feel very vulnerable if I had to park in a normal size parking bay as I’ve experienced the trauma of being blocked in and unable to get in my sanctuary while waiting for my next set of meds to Switch me ON enough to safely drive home.