We work hard to offer high standards of service at all times, but occasionally, we may not get it right. If you are unhappy with the service that we provide, we would like to hear from you so that we can improve and try to make sure your experience is not repeated.

Some issues can be sorted out straight away. If the problem is fairly minor, as a first step we suggest that you raise the issue informally with the team or person concerned. We will do everything we can to put things right.

If you would like to pay us a compliment, raise a complaint or submit a general enquiry about our services or the work we do, you can completing our short feedback form.

You can also give us feedback or make a complaint in the following ways:

  • Email: enquiries@mndassociation.org
  • Tel: MND Connect on 0808 802 6262 for feedback on our services
  • Tel: with feedback about our fundraising on 01604 611860
  • Write to: Feedback, MND Association, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BF

Principles of the MND Association's dealing with complaints and feedback

We are positive about receiving complaints, so that we have an opportunity to put things right, where they have gone wrong and to learn for future occasions.

We seek to ensure that complaints are:

  • dealt with by a named point of contact.
  • listened to and investigated thoroughly.
  • acknowledged speedily and recorded.
  • dealt with in an appropriate, fair and timely manner.
  • learned from – we use the outcome of complaints and any remedial action as a positive way of monitoring and improving performance.
  • all complaints are treated confidentially – only those who need to will have access to information about a complaint.

Who can raise a complaint or feedback

This policy is accessible to those who use our services, our supporters and volunteers, our members,  and members of the general public.

What will happen when I raise my concern

We will acknowledge complaints within five working days of receiving them and send a formal response within three weeks. If, due to the complexity of the complaint, this is not possible, we’ll keep you updated on progress.

Where possible, we will discuss your concern with you to understand what has happened. We will also talk about:

  • how long it will take us to investigate your concerns.
  • what you would like to see happen as a result of your complaint.
  • the way in which we will investigate your complaint.
  • how you would like to receive your response – for example, by telephone or letter.

Is there a time limit for making a complaint or providing feedback

It is best to tell us as soon as possible and within 12 months of the event happening or within 12 months of discovering you have cause to complain. Complaints received outside of these timescales may still be investigated if there is a reason the complaint could not be made earlier and only if it is still possible to investigate what happened.

Will my support be affected if I complain about your service

No. If you make a complaint this will not affect your support in any way. Any information you give will be treated in confidence and with sensitivity. Information about your complaint will be kept separate from any support records we hold.


We will respect your confidentiality and keep your complaint and feedback confidential as far as possible. Any information about the complaint or feedback will usually only be shared with those who need to know in order to help resolve it.

There may, however, be occasions when we cannot provide absolute confidentiality. This may for example arise in circumstances where a child or vulnerable adult may be at risk of harm. In these circumstances our safeguarding policy will take precedence over this policy and any relevant information may be shared with others concerned in the safety and welfare of people affected by MND.

Your personal information

If you use our feedback and complaints policy you are agreeing that we can use any personal information you send us for purposes connected with your complaint / feedback. We will only give your personal information to other people and organisations if you have given us permission to do so.

What if I'm not satisfied with your response to my concern

If you are not happy with our response please let us know within 10 days. We will provide you details of how to do this, in our feedback on your complaint. Your complaint will normally be referred to a more senior member of staff or trustee, who will carry out a review and let you know the outcome.

If you remain dissatisfied with our response you can contact the Charity Commission (0845 300 0218) or www.charitycommission.gov.uk) or the Fundraising Regulator (0300 999 3407).

The Fundraising Regulator

We are a member of the Fundraising Regulator (FR). The FR is the body for self-regulation of fundraising in the UK. The FR scheme is open to all fundraising organisations. As a member of the FR, the MND Association agrees to adhere to the highest standards of good practice with our fundraising and a Fundraising Promise.

You can read the Fundraising Promise on the FR website. You are entitled to take your complaint directly to the FR. Their contact details are: Fundraising Regulator, 2nd floor, CAN Mezzanine Building, 49-51 East Road, London, N1 6AH. Telephone: 0300 999 3407.
Email: [email protected]