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Compliments and complaints

 The TSA values comments and suggestions.   Where you think we have done particularly well we would be delighted to hear from you.  If you have a concern or you are dissatisfied with any aspect of the TSA’s services or activities, we also want to hear from you.  We will always try to respond positively and effectively to complaints and to put right any shortcomings that are within our control. This policy outlines how we deal with comments about any of the Association’s functions or services.

We aim to ensure that we:

  • Always treat your comments seriously
  • Deal with you promptly and politely
  • Respond to you in the right way, for example with an apology where things have gone wrong; or with an explanation or information as appropriate.

How to submit complaints

If you have a concern or problem you should try, in the first instance, to resolve the problem informally with the service or person concerned. They will often be able to put things right very quickly and simply.

However, if you do not feel comfortable doing this, or you find your issue has not been resolved via this route, you can make a more formal complaint. To do this please write to: Tuberous Sclerosis Association, Unit 56, 1 Emma Street , London E2 9FP.

It would be helpful if you could state clearly what the problem or compliant is, your name, address and contact details (telephone and/or e-mail).  You should mark your envelope “Confidential: For the attention of the CEO”.

In the event that your complaint relates to the CEO and you do not feel comfortable raising this directly with them, you should then mark your envelope “Confidential: For the attention of the Chair”.

Response To Your Complaint

We will acknowledge receipt within seven days of receiving your comment or complaint and we will seek to resolve your complaint as soon as possible.  If your complaint requires investigation you will normally be sent a considered response within a further 21 days.  Where this is not possible, the Chief Executive will let you know when you will receive a full response.

It may be necessary for staff to contact you for further information during the course of the investigation, so please do remember to include full contact details with your complaint.

All complaints will be treated with an appropriate degree of confidentiality and information will only be shared with staff and volunteers as necessary to assist the investigation.
If you wish to take the matter further

If, after you have received a response, you still think that the matter has not been resolved, you should again contact the CEO or Chair of the TSA explaining that you are not satisfied. Your complaint will then be passed to a member of the Board (who has had no previous dealings with the issue) and they will look at the matter further.

You will be informed in writing within seven days of who that person is and when they will respond to you. You will receive a response, in writing, giving you the findings and recommendations in answer to your comments within a further twenty-one days. This is the final stage of the Tuberous Sclerosis Association’s response.

The Chief Executive will submit an annual report to the Board of Trustees, noting all comments, compliments and complaints received by the CEO during the reporting year.

How to make a complaint about the TSA to an external regulator

All charities are subject to regulation by organisations that will take up complaints where:

(i) The regulator considers there is a serious risk of significant harm to or abuse of the charity, its assets, beneficiaries or reputation and,
(ii) The regulator decides that it needs to intervene to protect the charity’s beneficiaries, assets or reputation.

If you feel you have an issue that meets these criteria you should contact the following:

The Charity Commission in England and Wales by telephoning 0845 300 0218, or writing to Charity Commission Direct, PO Box 1227, Liverpool, L69 3UG or by e-mail via the Charity Commission website HERE

If your complaint concerns fundraising, you will need to contact the Fundraising Standards Board via EMAIL or write to: Fundraising Standards Board, 61 London Fruit Exchange, Brushfield Street, London, E1 6EP or you can phone 0845 402 5442.

Make a one off or regular  donation

£10 Means that we can send a support pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.

£25 Can help us develop materials that are included in our support services, flagship events or campaigns.

£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

To provide help for today and a cure for tomorrow.