Hello, and a question about support services

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21

Thanks EileenPatricia,

What you're saying about it not being rare to have one of the rare kind of parkinsonism is a useful way to look at it.  Got me thinking and set me off on one ........

 

I searched for half an hour and came across 38 conditions causing parkinsonism. Most cause many or all the problems caused by PD, plus other problems , and more than half are life shortening. 

Parkinson's UK info sheet talks about the few most well known causes of parkinsonism not caused by PD.  It sounds likely that other ones make up a large proportion of the parkinsonism not caused by PD.

It would be great to have a bit more easily accessible information translating the medispeak on these conditions into plain english for people with parkinsonism, and for GPs and neurologists. I think it could help reduce the number of people trapped in diagnostic limbo

Delayed diagnosis and misdiagnosis is a big enough problem in PD. My experience is that if you also have extra bits and pieces going wrong that don't fit with PD, but involve nearby bits of the brain,  one after another doctor can't cope with feeling out of their depth and says it's just not possible, and won't even try any clinical examination.

I reckon the longterm misdiagnosis of parkinsonism isn't just about the complexity of how to diagnose these conditions, it's also about power and communication in the doctor patient relationships, increasing cognitive and speech impairment, and socially normal disability discrimination in the doctor's response to speech and cognitive impairments. 

Some people are having to use all of their declining cognitive and speech abilities in trying to get access to proper assessment and diagnosis. Parkinsonian speech and cognitive problems are often assumed to be evidence of psychological problems. There's loads of research on this being a "normal" response to communication impairments. This normal discriminatory response,  can result in doctors refusing assessment for physical causes,  refusing to make reasonable adjustments to enable patients to communicate with them, and believing they are doing the right thing by actively preventing communication about physical health problems. So doctors have no chance of taking in information that could allow rational assessment and diagnosis.

 I guess some people here who have a quiet voice and slowness and freezing of speech will have found out that all another person has to do to stop you being able to communicate or think, is start to speak louder, talk over you, interrupt, fire questions at you and not wait to let you speak, deliberately misrepresent what you are saying and not allow you time to say they have misunderstood, repeatedly  lead the conversation away from what they know you are trying to talk about and generally make the situation more pressured and antagonistic.  all these annoying, but socially normal ways of communicating are generally unhelpful for anyone, but can be disabling and silencing for PWP.

these are all fairly common behaviours for a stressed out person in a position of power. Lots of doctors under pressure, will use a person's communication impairments against them to prevent communication. And they'll believe they are doing the right thing for the patient and to protect NHS resources from people with psychogenic problems. 

Once they've started down this route,  it's near impossible for doctors to take in information from the patient that could alter their rigid view of the patient

I know it sounds melodramatic, but it means that patients with progressive conditions can be spending the last years of their life or the last years of their independent life, caught in this vicious cycle, trying to communicate with the NHS to get access to rational assessment and diagnosis, but whatever they say, and the way they say it - the parkinsonian communication impairments - are taken as further evidence that no neurological assessments should be done.

One way to break that vicious cycle is to provide information from other sources that the doctor may have some respect for. 

So from where I'm standing, some more clear information on the causes of  parkinsonism other than PD, and talking a bit more about more than just the better known ones - that even GPs have heard of and may already be less likely to be longterm misdiagnosed -   would be really useful. 

And more information on how to enable communication with people with communication impairments in parkinsonism,  and advice on how to work round the problem of people's neuro problems being discounted as a result of the discriminatory response to their parkinsonian speech and cognitive problems, that would all be great

I don't know if PDUK  want to get into all that, but it would be so useful if somebody did.

 

 

22

Hi Rhubarb

 

I am afraid your so right about medics not allowing for the very disabilities they are treating the patient for.

Its the pressure of time i suppose as much as anything, although you could say it just basic personal skills some medics are lacking   You sound as if you might  been up against it in your quest for a dx..  I read once that amongst other cultural pitfalls, in the US/Western  world Japanese are in danger of being  diagnosed with PD because of their relatively impassive expression.

I've posted on the wrong page - I hope it makes sense  where itis

 

Regards

 

   ..

23

Eileenpatricia,

that's really kind.  Thank you.   And thanks for reading through all that! -   with the cognitive slowness I can write sentences that make sense to me at the time, but turn out to be quite hard work for others to interpret red face

what I wrote is from mine and other people's stories, and I think if this kind of thing had only happened to me I would see it as just unlucky.  When it's happening to lots of people, and it looks like it's systemic problems in the NHS, that makes it seem worth going on about, and spending energy on.

I hadn't known that about the increased risk of being wrongly diagnosed as having PD for Japanese people in western countries - so  awful for all the people this happens to. But it's a really useful, clear way of saying how communication norms and prejudices get involved in diagnosis. Thank you.

I hope you're having a good day today,

rhubarb

 

24

Hi Rhubarb,

You're right that our information sheet on Parkinsonism only looks at the most common forms. We do update our information regularly, so if you do think we are missing out anything important, or that our information could be more accessible, I would love to chat to you about it. You can contact me on [email protected] or on 020 7932 1316.

Thanks

Alison
Information Resources Manager

25

Hello again,

A while back I was asking about the issue of which support services are available to people with parkinsonism not caused by PD.

The Parkinson's UK legal guff and website both say that Parkinsons UK supports people with Parkinsonism from other causes, but there's been a problem with people with parkinsonism from other causes being refused all help from support workers, with their managers supporting them on this and with the helpline also being confused on this issue. 

I was wondering if there's been progress -  have support workers and their managers been written to to remind them that their job includes providing support to people with parkinsonism from other causes? 

rhubarb

26

Hi rhubarb

We've let Barbara know you've posted. So hopefully you'll get a reply soon.

Best wishes
Dave
Digital team

27

Hello Rhubarb - apologies for the delay, I've been tied up for a few days.  We are just in the middle of planning for the implementation of our new-look information and support service in 2015.  We want to make sure we make best use of the all the ways we offer support - face to face, helpline, peer support, self management as well as online, of course, so that we help as many people as we can.  There's a lot of change on the cards as we move into our new strategy next year, but it is also a good time to reinforce messages about support to people with parkinsonism.  Rather than do that as a on-off on this issue, we will do it as part of the wider changes and improvements we make in the coming months.

Barbara

28

 

Thanks Barbara,

I said before on this thread that a busy person working in a big organisation and a service user with a progressive condition are going to have a different understanding of how urgent this is.

I raised the issue six months ago because for years I'd been struggling to get basic subsistence needs met - and could have done with the help of a parkinsons worker at any point. From my perspective - because the condition is lifeshortening and progressing, any delay, let alone a "we'll talk it through sometime in the next year and see what we come up with" response is a serious practical problem for me. 

What I need to know for sure is that that if I contact the local support service, I will not get the same response I got before. I need to know their managers won't respond the same way as before, and I need to know the helpline now understand this issue. All I'm asking for is something that parkinson's uk already says it does. 

If your legal info and website says you support people with parkinsonism from other causes, then you are fundraising on that basis too  -   I don't understand what there is that you need to sort out that could take so long. Why would you not first ensure that you provide the service that you tell us you provide  -  then if you think that needs changed, let that take as long as it takes.

It takes one email of three or four lines, to remind all employees of parkinson's uk that they are to support people with parkinsonism from other causes, to the best of their ability,  just as they support people with parkinson's disease.

Whether it's been a widespread problem across the UK, or if this problem has only occurred in support workers and management in the region I'm in, and in some of the UK helpline staff,   a short email sent to all employees solves the problem, doesn't waste lots of time and doesn't cost parkinsons uk any money.

Could this go ahead? If not why not?

rhubarb

 

 

29

Hear Hear!!!

30

Hi Rhubarb

I am really sorry to hear to hear about your experience when contacting the Helpline.  I know the team do speak to people with a range of Parkinsonism's every day, so I can only apologise that you did not get what you need on this occassion

I will remind everybody that this is our policy so hopefully this should not happen again

I am always happy to hear about peoples experience of using our service... both positive and negative....so if you would like to discuss this or any other issue, then please do get in touch

31

Thanks Tim,

The helpline was confused on this issue, but the main problem isn't in the helpline. Would you agree to sending out an email like I've suggested, just to remind support workers and their managers that PUK does work with people with parkinsonism from other causes? If not, why not? I would like to know for sure that I can contact support services in the next week or so and get a different response.

rhubarb

 

32

Hi Rhubarb

Again, we're sorry that you've had difficulty accessing support.

We've said earlier that we have issued guidance on this issue to our information and support teams - Tim has confirmed this for the helpline and I've also checked with Shirley who manages our information and support services.  We don't think there is a need for a further email to ISWs to highlight this point.

As part of our approach, we sometimes signpost or refer people to other specialist agencies.  But as a person with Parkinsonism you can contact our support services this week or next week to find the support you need.  Please do contact them.

If you have concerns about the service you receive you can contact me at [email protected]

33

Barbara,  What you said in your earlier posts is that you would raise it with managers to see how much of an issue it was, and that in the future, PUK would make a decision on what services they would provide to people with parkinsonism from other causes. I suggested that the likely outcome of this would be that you would be told by your managers that there was no problem here.  And I said potential service users would have a different sense of how urgent it was to sort this out.

What you didn't do was promise that managers and the support workers under them would be told that they were to ensure support services were provided to people with parkinsonism from other causes. A short email to every employee 6 months ago,(or to each manager asking them to forward the email to each employee under them) would have done the job.

Because what you're saying to me now doesn't match what you said previously, I can't feel confident that when I try to access support services again, it will be OK.

rhubarb

 

 

 

 

34

rhubarb

Our services are available to people with Parkinsonism. As all have confirmed, guidance has been sent to the ISWs and our helpline about this issue. But you'll have to decide whether you feel it's appropriate to make contact again.

If you do contact our services again and have trouble, you can contact Barbara directly about the particular incident and this will be addressed.

Ezinda

 

35

 

In Barbara's last post she said that I'd already been told that guidance had been sent out - as if I was just making trouble. But she hadn't ever told us this.  This may well have been a mistake, but it would have been constructive for it to be acknowledged by PUK.

If guidance was given to the managers and/or information and support workers, it's not clear why we couldn't have been told this at the time.  My posts show that this is the information I was asking for and needing.  I don't know why straightforward answers couldn't be given.

On this thread I've kept being told to phone people at PUK about the problem. The reason I took this to the forum is that phone calls and emails had made no difference. 

 rhubarb

 

 

 

 

 

 

36

EileenPatricia -  thanks for your support. All best, rhubarb