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I was not given much information at diagnosis and if that, this information was not easy to assimilate as I was very upset. I was given tonnes of information, both verbal and written, but I wasn’t able to take it in as I was quite shocked with the diagnosis. All but one of the nine people that we interviewed felt that the amount of information provided to them, as well as the format that this information was presented, was not helpful to them. We were told that there was not enough information or that too much was given, but the overall consensus was that the feelings evoked by the diagnosed made what was offered difficult to assimilate. Specific services that were mentioned were those which provided information and support for carers. These were praised because of the provision of ongoing emotional and practical support post-diagnosis. In particular, the Carer Information and Support Programme (Alzheimer’s Society) and Carers’ Information Session (St Francis Unit) were highly regarded by the people who completed our survey. Our survey found that 61% of carers were not offered a carer’s assessment and many rated 3 out of 5 in terms of how much they felt cared about at the point of diagnosis. More long term experiences shared with us suggested a lack of adequate specific support for carers and social care services (such as care homes, home care and specific support provided by Nottinghamshire County Council). We were also told by carers that often health and social care services are not joined up, and that this is not only detrimental to the carer, but also the person with dementia. It is difficult navigating through the system. There is no-one to co-ordinate things. There is no facility to follow up anything. No-one asks “How’s it going?” or “What next?” Very often what we think happens isn’t in place. It’s crisis management – we go from one crisis to the next. We wanted to find out what people who had experienced a dementia diagnosis thought could improve their experience and the experiences of others: More information at diagnosis and an opportunity for follow-up discussion. 57% of people who completed our survey told us that they would have liked to have been given more information (both verbal and written) at the point of diagnosis, and been given more time to discuss this with a health professional shortly after. More emotional support after diagnosis.13% specifically told us that they would welcome more emotional support after diagnosis through face-to-face contact with someone so that they could talk about their experience. 6 | Information provision and support at dementia diagnosis
Current guidance stipulates that the waiting time from being referred by a GP to being seen by a specialist should be no longer than 6 weeks 2,3 . However our data shows variation in how long people are waiting to be diagnosed, with some individuals having to wait several months. There is an indication that City residents are waiting longer than County residents. We know that this can be frustrating for those who are affected. We would expect that everyone would be seen within a six week period and there would not be a difference between City and County residents. Our data has also highlighted the perception that some GPs are not making timely referrals for diagnosis. However we do not know the circumstances of the alleged delays. This may warrant further exploration. We know that benefits of a timely diagnosis can allow people to plan their care in advance, to access support and information, review physical health and co-morbidities and allow access to peer and carer support. This ultimately maximises the chances that people with dementia and their carers can live well with the disease. Improve waiting times from the point of referral to diagnosis to comply with current guidance with a particular focus on reducing inequality between City and County residents. We recommend that actions are put in place to reduce the waiting times for individuals with suspected dementia. We would anticipate that there would not be any variations for individuals based on where they live and that timely access to the service should be consistent. 2 Best practice in Memory Services: Learning across from across England. (2014) https://www.england.nhs.uk/wp-content/uploads/2014/12/memory-clinics-final.pdf 3 Assessment and diagnosis (Factsheet 426), Alzheimer’s Society. (2014) https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=260 7 | Information provision and support at dementia diagnosis
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Page 3 and 4: We wanted to understand people’s
Page 5: The consultant was very abrupt in h
Page 9 and 10: The Nottinghamshire Dementia Joint
Page 11 and 12: There are venues that provide a Mem
Page 13 and 14: When was the diagnosis made? suppor
Page 15 and 16: Table 1. Star ratings for making an
Page 17 and 18: Figure 8 shows that: 29% (15 people
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Page 21 and 22: hospitalised that the family receiv
Page 23 and 24: We asked everyone that we spoke to
Page 25 and 26: Six experiences described the overa
Page 27 and 28: My husband used to have follow up a
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Page 31 and 32: We collected 60 completed surveys f
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Page 35 and 36: Figure 3. Overall experience by ser
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