Dementia Voice: Shelagh's story

Shelagh Robinson is living with dementia. Find out how she helped to influence MPs to improve post diagnosis support.

‘For me the best part of the campaign was being given the opportunity to speak up for those people who like myself, had experienced appalling post diagnosis support’

Shelagh, an Alzheimer's Society campaigner

How did you become involved and what was your role?

As a result of something I wrote on line on one of Alzheimer’s Society Facebook posts I was asked to spearhead the campaign for better support for people with dementia after diagnosis. The campaign took the form of a petition asking MP’s to pledge support for this in their election campaigns. Signatures were mainly collected online although some were collected manually. We achieved more than 50,000 signatures which I delivered to 10 Downing Street.

In March the Society organised a lobby at the Houses of Parliament inviting all MP's to come and learn more about Dementia and to support the petition. I was asked to attend and my husband and two teenage grandsons who are all Dementia Friends also attended and we were able to talk to the more than 200 MP’s who attended the lobby. 

There was a tremendous variety of responses. Some MP’s were knowledgeable and committed to Dementia support, predictably many of these had experience of Dementia within their own families but some were just completely supportive and clued up about what was happening in their own areas. Sadly it appeared that some had mainly come to have a picture taken with Angela Ripon for their election publicity and were not very interested in deeper exploration.

What it was like to be involved?

For me the best part of the campaign was being given the opportunity to speak up for those people who like myself, had experienced appalling post diagnosis support and to say ‘this is not good enough.’ Talking to members of parliament, some were very clear that what would like to see would be the same kind of support given to patients diagnosed with dementia as is given after cancer diagnosis. It was also good to be part of a campaign to raise awareness and to see how positive the response was to our campaign was. There is still sadly a degree of stigma and sense of hopelessness around dementia that we need to work hard to combat and campaigns like this do achieve this to some extent.

The worst part of the campaign was the realisation, not for the first time that so much is down to money and we are fighting for a bigger slice of a small cake and some MP's were realistic and also negative about this.

How were you supported?

Throughout the whole campaign I was fully supported by the Society. The day of the lobby was a difficult day for me as my mother had died on the previous evening; she was 94 and had vascular dementia.  I knew that the best thing I could do to honour her memory was to stay in London. The sensitivity and kindness of the Society’s staff that were at the Houses of Parliament was beyond words. It confirmed for me that Alzheimer’s Society lives up to its ideals and that staff treat supporters who have dementia with the respect, care and concern that they are fighting for, as a norm.

It is hard to determine what we achieved beyond a lot of consciousness raising but we can only hope that when parliament has to vote on legislation around dementia care they will do so from a more informed basis. As well as the lobby of members of parliament it was clear from feedback that this was an area concern that many people who signed the petition had not previously been aware of and hopefully their concern will result in individual local movements for change.

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