View Full Version : Any questions you may have?

17th February 2011, 10:51
The local MP is attending our MND group meeting and it's too good an opportunity to miss to get some questions tabled on burning issues.

I would be interested in hearing any topic areas / questions you may have. Time will be of the essence, but I would like to raise some of the most pertinent issues that you feel are affecting you, giving concern or you would like to be challenged.

Jacqui Priestley
17th February 2011, 16:30
2 questions: can the Govt ensure multidisciplinary clinics & other MND best practice will be preserved under current NHS changes; and 2) what Central Govt financial support available for future research?

17th February 2011, 22:46
My question is this: When a patient is suffering a rapidly degenerative disease like MND, is it acceptable that it has taken 12 weeks for my county council ( Hertfordshire) to carry out an assessment of my needs for community care services and set up Direct Payments to enable me to employ a carer so that I can stay in my own house. The money will take a further two weeks to arrive in my bank, making the total time from first contact 14 weeks.


17th February 2011, 22:51
Thanks for these, I'll see what answers I can get.

Do you know what the target days / performance indicator is for the care needs process in Herts? Below is what I could find from another Council, but broadly the targets should be the same.

Category 1 - Critical/High Priority

1. If there is critical need, which requires immediate action because of the risk of serious harm, we will start the assessment within 24 hours.
2. If you need services urgently before the full assessment is complete, we will provide these within 2 working days.
Category 2 - Substantial/Medium Priority

3. If your needs appear to be substantial, we will start the initial assessment as soon as possible. Our target is to start within 5 working days.
4. If you need services urgently before the full assessment is complete, we will provide these as soon as possible. Our target is to provide these within 5 working days.

Hospital Discharge

5. If you are in hospital and are referred to us for an assessment before you are discharged from the hospital, we will respond within 3 days.
6. Our target is to complete the assessment within 10 working days, provided that you are well enough to take part in the assessment.
Category 3 - Moderate/Low Priority

7. If your needs do not appear to be urgent, we will write to you within 10 working days either to let you know when your assessment will start or to let you know that you do not appear to be eligible for services.
8. We will start non-urgent assessments within four weeks of contacting you.

Assessment Process

9. We will complete an assessment and/or reach a decision about providing services within four weeks of starting an assessment.
10. Once the assessment is complete and a decision has been made, we will write to you to let you know the outcome within one week.
11. Once the decision has been made, we will provide services such as care packages within one week.

17th February 2011, 23:01
Hi G60dubber,


"The current inquiry into 'Disabled Living' is unlawful because disabled people cannot participate. Will Dr Hywel Francis MP stop the current inquiry and give disabled people the opportunity to 'voice' their views?"

Good initiative.

Best wishes


17th February 2011, 23:03
Thanks Graham, do you know when the consultaion period commenced and is due to end?

17th February 2011, 23:07
It has just started and last two months. Cheers

21st February 2011, 01:05
hi- this will be quick as i lost the first response i prepared...

just some ideas:

you may find the following helpful:
- request the MP sign the EDM 254 on MND
- request the MP join the all parliamentary group on MND
- request the MP comes to another local group or support meeting and also gets involved tackling some of the barriers to services that group members may be experiencing
- refer to the neruological alliance information (see www) as they mention that in the UK there are significantly lower numbers of neurologists than other EU countries, therefore there will be a knock on effect re access to diagnosis/ care and support for people with MND and other neurological conditions
- with local GPs going to be commissioning services it is key that they are informed about MND , therefore it is essential that the neuronavigator is used within the commissioning process
- give examples about the impact of government cuts on the members of the local group. some examples may be the cuts requiring people to pay for "small items" such as adapted cutlery, key turners, kettle tilters etc- mean that people with MND on low incomes may struggle to be independent without the financial capacity to buy what they need
- press the need for co-ordinated care and how a reduction in services for people with MND may reduce the quality of care and also cost more money in the long term
- benefits system can be disabling for people with MND, particularly if someone is not yet diagnosed (stress the length of time it can take for diagnosis)- people can be told to look for work etc and face benefit tribunals when they are struggling with every day living with MND. it can be distressing for people with MND to be seeking work when struggling with issues such as eating, speaking and day to day activities; difficulties with DLA- having to prove that one is eligible - the stress etc of the forms and appeals.
- remember that many people with MND may find communication difficult so if members of your group are aware of people who used to be more involved but cannot be due to health or communications issues be sure to involve them and their families so that their voices/ perspectives are included
-talk about how delays in getting diagnosed can result in delays in accessing services
- rapidly progressing disease faced with a health/ social care service that can be experienced by people with MND as slow to respond to need therefore meaning that people with MND cannot always get access to services/ assistance when they need it
- invite the MP to fundraising activities
- invite the MP to hold a fundraising event for MNDA at the house of commons

that is all i can recall from the email that i lost... good luck

21st February 2011, 01:11
just thinking what about asking the MP to come to the regional conference and also to become a member of the MNDA?

21st February 2011, 01:32
another thought

why not ask the MNDA national and regional campaigns manager for any suggestions for your meeting?
hope all goes well

21st February 2011, 01:45
Some interesting points well made. Lucy. I've asked National Office for a response to them in respect of practicality and any lobbying/initiatives which may already be under way from the Association, and therefore be reinforced by local/individual action..


Robyn Copley-Hirst
21st February 2011, 10:49
Hi Everyone,

Any Questions we may have...

There's some great ideas and points being made on this thread. If you email me G60dubber I'm more than happy to get an up-to-the-minute response as to national campaigns and initiatives etc, but I think if the MP is making the effort to come and visit a group he will be most interested in your personal questions and thoughts...

To be honest, I doubt we could offer any more suggestions for questions to ask that others have not already raised! There have been some great questions to ask so do let us know how you get on!

And if you do need further input from the MND association just pop me an email and I'll get right on it today :)

Best Regards,


21st February 2011, 14:50
On behalf of those of us not so able to address these issues, thanks to G60dubber,L uce and others for their contributions to taking this on.

21st February 2011, 22:15
Special treatment for those with MND

I was browsing the Health and Social Services and Social Security Adjudications Act 1983 and I found this:

XI. Creuzfeldt Jacob Disease (CJD)
75. The Government has made an undertaking that users of non-residential
social services suffering from any form of CJD should not undergo a charge
assessment, but should be treated as automatically exempt.

Here is a precedent for special treatment where a fatal disease is involved and this should apply also to MND.

What this is referring to is the need for lengthy financial and other assessments before your council Social Services will decide how much financial support they will give you for obtaining care and how much you will be required to contribute towards the cost.


21st February 2011, 23:37

Welcome-thanks for the nice feedback.

My mum and I went to her MP a month or so ago, and before that we spoke with the campaigns manager. Details are in December thumbprint magazine (but the phone number is incorrect). If you look on the MNDA site there is also a section re campaigns and training- hope people from each local group can try to get people to attend a workshop:


all the best

22nd February 2011, 00:52

In thinking why they may have made some people with a terminal illness exempt and not others i don't know if the prevalence figures are less, as it seems less people will have CJD or vCJD than MND at any one time in the UK, therefore in purely financial terms it means that less of a financial implication for local services if they exempt a smaller number of people?


It would be interesting to know who decisions are made re which diseases are exempt.

23rd February 2011, 18:18
Hi Luce

With only around 5000 patients with MND in the whole of the UK we represent a mere drop in the ocean of cost. We probably have no more than 10 people in each county, so I am sure it is not a decision based on financiaal condiderations..

The next step is to try and research how the CJD group obtained their fast track position and then find out how it is implemented. For example, does it require a change to the relavant act of Parliament? Who has the power to direct Social Services to give us priority? We must first find out how this works and then we will know how we can influence it.


Robyn Copley-Hirst
3rd March 2011, 14:34
Hi Everyone,

We noticed that benefits came up as an issue in quite a few of our threads and we have decided to try and improve the information we give out. I've started a thread here (http://forum.mndassociation.org/showthread.php?278-We-Need-Your-Views-Help-us-improve-our-benefits-information&p=1745#post1745) to ask for your views on the subject.

I thought I'd post it here as there were some interesting points and people mentioning the benefits system.


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