campaign Jenny Sims reports on NUJ lobbying to help those with a devastating disease A call W


for better dementia care


hen Bob Norris, a former NUJ assistant general secretary, died on October 12 aged 78, tributes poured into


the union. His wife Pauline and son, Drew, colleagues and friends remembering the man, his work and the campaigns he championed. This is not an obituary. It is the story


of how his personal experience of dementia led to the NUJ campaigning for more than two years to help people get a diagnosis earlier and to receive better treatment and care. This has included writing to the


health secretary in England for more social care funding for people with dementia, making a submission to the Welsh government’s consultation on its first Dementia Action Plan and encouraging Irish members to sign a dementia charity’s petition to the Irish government for increased funding for community support and home care. It began in April 2016, when Bob, on


behalf of his Portsmouth branch, addressed more than 500 members at the NUJ’s Biennial Delegate Meeting (DM) in Southport, where policies are proposed, debated, voted on and adopted or dropped. Motion 62 called on the NUJ to lobby


all governments for ‘faster access to diagnosis and better services’. The Alzheimer’s Society says there


8 | theJournalist


are more than 850,000 people with dementia in the UK, with numbers set to rise to one million by 2025; Ireland has 55,000, predicted to rise to more than 68,000 in 10 years. Norris and his supporters won the vote. What happened next? For readers unfamiliar with the internal workings and structures of the NUJ (and there must be many), following a DM, all approved motions are allocated to one or more of the councils to deal with. In its wisdom, the NUJ decided the


dementia motion should be shared between the 60+ and the Equality councils. And, despite no extra budget for the work and few pairs of hands to do it, the 60+ council still agreed to make it their priority until the next DM. The most sensible plan seemed to be


to contact all the leading dementia charities in the UK and Ireland, examine their research and current lobbying campaigns, and offer support. On the bright side, there is evidence of successful pioneering projects throughout England, Scotland, Wales, Northern Ireland and Ireland. But everywhere, there are still problems with underdiagnosis or late diagnosis, and a need for better training for health and care professionals and better services, whether to enable people to stay in their own homes


NUJ members were asked for ideas by the Alzheimer’s Society for a media guide on dementia. this is now available


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for longer or to support those living in residential care. In Wales, I met the policy director of Alzheimer’s Cymru for a briefing, which helped me submit suggestions for inclusion in the Welsh government’s Dementia Action Plan for Wales, 2018-2022, and later to comment on the draft document. These included improving rural services and a wider adoption of digital technology. Over time, we’ve made contacts and


built relationships with charities in England, Ireland, Northern Ireland and Scotland, which was the first country to publish a National Dementia Strategy. Scottish 60+ council member Ann Coltart and I attended a Scottish Alzheimer’s Society’s annual general meeting and conference and wrote reports for the NUJ’s Scottish, Welsh and 60+ Councils.


In addition, as an affiliate of the


National Pensioners Convention (NPC), which represents around 1,000 organisations with more than one million members in total, the NUJ campaigned successfully to get it to adopt ‘lobbying for faster dementia diagnosis and better services’ as policy. As a result, Jan Shortt, NPC general


secretary, recently wrote to Matt Hancock, England’s health secretary, calling for more funding for dementia. In another recent development, NUJ members were asked for ideas by the Alzheimer’s Society for a media guide on dementia, and to comment on the draft document. Published just a few weeks before


Bob’s death, the dementia-friendly media and broadcast guide has been approved by the NUJ’s ethics committee, and is available on the NUJ website (www.nuj.org.uk/documents/ dementia-media-guide-2018). Sadly, because of his illness, Bob was


unaware of many of these developments, but his family and friends can be proud that he made a difference, and that NUJ lobbying on dementia will continue. A Just Giving page for donations to Alzheimer’s Research has been set up in Bob Norris’s name by his son. See: www.justgiving.com/fundraising/ Bobnorris


Jenny Sims is joint chair of the 60+


Council and Wales member of the Freelance Industrial Council


BRAIN LIGHT / ALAMY STOCK PHOTO


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