Doncaster “Dives Deep” into Dementia support for patients and families

NHS Doncaster Clinical Commissioning Group is about to embark on a “deep dive” assessment of the dementia service pathways in Doncaster.

The “deep dive” approach is designed to look at each element of the dementia pathways from end to end, including case finding, identification of risk, referral, assessment, diagnosis, post diagnostic care, care planning right to the end of life care.  This approach will aim to improve pathways so people with dementia and their carers/families receive a timely diagnosis and are supported throughout the whole progression of the pathway.

The deep dive will start next month until September and will explore opportunities for future improved service developments.  Through a series of workshops, all those involved in dementia care, including clinicians, practitioners, voluntary and community agencies and people with dementia and their carers, will feedback how services can be improved and share their experience.

The findings from the deep dive will produce new services for people with Dementia and their families and changes to the current pathway will be made to benefit them.

Local woman Sharon Faulkner shared her experience as a daughter of a patient with Dementia in Doncaster with the CCG Governing Body on 7 February 2019. Sharon now volunteers with Healthwatch Doncaster as a result of her involvement with her mother’s dementia care.

Dr David Crichton, Chair of NHS Doncaster CCG said: “The CCG is totally committed to listening to patients and making improvements to services as a result of patient feedback.

“We are very grateful to Sharon for sharing her experience with us and her invaluable contribution is greatly valued in shaping the future Dementia pathways in Doncaster and we want to make sure that patients and their family members are supported in the most appropriate settings and get the right care first time, every time.

“This week sees the launch of Dementia Action Week in Doncaster, with a full programme of events and activities to support patients with Dementia, their families and carers. Please help us to publicise these activities and support all those living with Dementia in Doncaster.”

Details and the Programme of activities taking place in Doncaster for Dementia Action Week, which starts on Monday 20 May 2019, are available here.

The CCG’s Engagement and Experience Committee reviewed stakeholder engagement in dementia service earlier this year. You can read further details here.

Details of Sharon’s Patient Story are included below:

Patient Story (Extract from minutes of the DCCG Governing Body meeting on 7 February 2019)

Dr Crichton introduced Mrs Sharon Faulkner to the Governing Body who attended the meeting to relate her mother Cath’s story following her diagnosis of Dementia. In 2015 Mrs Faulkner’s Mother received a diagnosis of Dementia and she became her full time carer after taking early retirement as a result. Power of Attorney was eventually given to Mrs Faulkner which proved to be very important however she learned that there is very little information available. Her mother was given a Personal Health Budget for carers and St Leger Homes arranged for a wet room to be installed in her home. On the whole the carers were very good with her mother but over time the 30 minutes visits became 10 minutes and she changed carer organisation. This proved upsetting to her mother as she had grown to know them well. Access to Occupational Therapy, the memory clinic team, opticians and her local pharmacy proved helpful.

In September 2016 her Mother’s health declined and she began to experience hallucinations and was unable to be left alone. Mrs Faulkner contacted the GP who advised her to take her mother to A&E as she may have an infection. She was triaged to the Urgent Care Centre but it was so busy that she remained in A&E and after 12 hours was admitted to the Medical Assessment Unit (MAU) which she felt was not suitable for her mother. After 2 days she was transferred to another ward which, although dementia friendly, was unsuitable and felt more staff training was required. Mrs Faulkner was contacted by the ward to deal with her as she was confused and removing oxygen masks from other patients. The family had decided to make an official complaint to the Acute Trust however her mother was then transferred to Mallard Ward which she described as ‘brilliant’. Sadly her mother passed away on 16 January 2019 due to the infection.

Mrs Faulkner has subsequently joined Healthwatch as a volunteer so she can offer her help and support to other Doncaster residents who may be going through similar experiences and who may not be aware of the information and services available to them.

Mr Russell asked if Mrs Faulkner felt that those with the loudest voice receive a better service or just what they are entitled to and when her mother’s health deteriorated did the family have to become more vocal. Mrs Faulkner replied that it was not that they received a better service just that some people do not have family to speak out for them. The family felt they had to push for help.

Mr Fitzgerald asked if she thought it would be helpful if patients and carers had one co-ordinator who could access services on their behalf and Mrs Faulkner agreed that this would have been very beneficial. It would have been preferable if her mother could have received medical attention in her own home rather than a hospital environment. Dr Pieri queried if her mother had been treated at home she may have felt that, had she been treated within a hospital environment, she may have lived. Mrs Faulkner stated that had she lived she would have been transferred to a care home and the family would not have wanted that.

Dr Jones commented that a campaign to highlight Power of Attorney by NHS Doncaster CCG and Healthwatch may be valuable in the future.

Dr Crichton thanked Mrs Faulkner and stated that the Governing Body patient stories are very powerful and invaluable to the CCG. Mr Emmerson stated that he would welcome further discussions with Mrs Faulkner on how her vital contribution could help improve the dementia pathway and services going forward to which Mrs Faulkner agreed.