Hi. I am Tilda McCrimmon, @alzscot Lead Nurse for Dementia at the Golden Jubilee Hospital and NHS24. I am privileged to be writing the February contribution of the @Alzscot Dementia Nurse Consultants Group.
“Facebook and Twitter accounts hacked” https://www.bbc.co.uk/news/technology-51424352.This was the BBC headline on the 8th of February 2020.
There seems to be frequent articles about breaches of internet security and misuse of people’s digital data accompanied with warnings and advice on internet safety. The internet has changed how we chose to share our personal information. The adverse publicity can make us wary about sharing our information with anyone, especially when we don’t know how it will be used and by whom. This reluctance may discourage people from using systems that can support them in times of need.
Having spent most of my nursing career working in hospital care, I was aware of how patient information was shared. The increase of electronic records systems making it easier. I had no idea how information was shared with NHS 111 until I started working for them. I was quite surprised to learn that NHS111 relied on the Emergency Care Summary, Key Information Summary and the information supplied by the caller.
The Emergency Care Summary (ECS) generally contains a list of prescribed medication and adverse reactions. It is uploaded twice daily from GP computer systems. It can be accessed by Secondary care settings, the Scottish Ambulance service and Out of Hours services like NHS111.
The Key Information Summary (K.I.S.) is an additional section of your GP record, which usually with your consent, can be completed to provide extra information to guide your care. It is updated electronically and any changes will be updated at the same time as the E.C.S. These two articles highlight the importance of the K.I.S. at the end of life https://bjgp.org/content/70/690/e20#sec-25 https://spcare.bmj.com/content/6/3/405.3. Co-ordinated, person centred end of life care is wonderful. For people living with dementia a K.I.S. can be used through the whole of the journey. The shared information can be used to support independent living, person centred care and potentially reduce inappropriate transfer to secondary care. Below is a list of possible information to be included in a K.I.S.
- Past Medical History
- Baseline functional and clinical status, including capacity
- Triggers for deterioration
- Current care needs and arrangements
- Emergency Contacts and Next of Kin Details
- How far to escalate care
- Preferred place of care, and final care, other specific patient/carer wishes
- Palliative care information
- Legal issues such as power of attorney
- DNACPR status
- Special alerts – for example around staff safety
I would suggest the K.I.S. could be discussed as part of Post Diagnosis Support and updated at any reviews with the person with dementia and their important other. It would also be appropriate that anyone who provides support ask their GP to start K.I.S. including the name of who they support with details of alternative plan if they are unable to maintain role,
Caller provided information. NHS 111 receives many calls from people living with dementia or their important other. Making that call can be very stressful. An up to date K.I.S. can help reduce the stress by reducing the number of questions asked or by informing of any communication difficulties. It can also support formal carers who may not have information readily available. The information in the K.I.S. will also support NHS111 staff to provide person centred outcomes. It can also provide information for staff to raise concerns quickly to appropriate agencies.
Thank you for reading my blog & please post any comments here or at @ASDNC.
Tilda McCrimmon, Alzheimer Scotland Lead Nurse for Dementia
Golden Jubilee & NHS24.