Tilda talking about Key Information Summary & #Dementia

Blog1

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.

Contributor

Tilda McCrimmon, Alzheimer Scotland Lead Nurse for Dementia

Golden Jubilee & NHS24.

Blog2

Stairlift Eligibility & #Dementia Overcoming an Occupational Therapist’s Dilemma

Ailsa shares in this short film clip how she makes a difference to people’s lives everyday #Dementia.

My name is Ailsa Dow. I am a senior Occupational Therapist employed by Fife Health and Social Care Partnership. I work as a community occupational therapist within the social care service. I have a very rewarding role providing assessment, advice and interventions to people living in the local community. My work is extremely varied and I have the privilege of meeting people from all backgrounds who experience a diverse range of physical and mental health problems.

Occupational therapists are essential in enabling people with physical and/or mental health conditions to live well and engage in meaningful activities and roles in their own home or homely environment. They have many skills to offer and one of the key ones is that they are brilliant problem-solvers and find practical solutions to everyday difficulties.

One of the most common challenges we assess people for is negotiating their internal stairs. A stair lift adaptation can be a vital solution to enable the person to maintain their living routine and access both levels in their home. A person living with dementia may experience additional problems with their executive function which includes aspects of working memory, attention, sequencing and spacial awareness. This can be a dilemma to occupational therapist’s when they have to carefully weigh up the benefits versus the risks in each activity or intervention such as safety to use a stair lift.

Some factors that could impede safe operation of a stair lift might be:

  • Lacking insight to understand the physical need to use the lift, try to walk past it and use the stairs.
  • Difficulty using the remote control to bring the seat down from the parking position.
  • Neglecting to use the folding footrest or wear the safety belt.
  • Becoming anxious and panicking when the stairlift moves, stops or bleeps during travel or suddenly develops a fault.
  • Becoming distracted or losing concentration during sequence of operational procedure.
  • Experiencing spacial/visual issues when seated on the stair lift in a high position over the stairs.

Rather than take a risk-averse approach of declining stair lift recommendation, it is very important to value the person as an individual and consider their strengths and capabilities in relation to safe stairlift use and what support can be provided to enable the recommendation to proceed. The Royal College of Occupational Therapist’s guidance document ‘Embracing Risk, Enabling Choice’ emphasises that ‘risk should rarely be an excuse for stopping an activity that is important to the progress of the service user’(RCOT 2018). It could be considered discriminatory in practice to decline a person from the benefit of a stair lift, without a thorough and personalised assessment, on the general assumption that because he/she has dementia it would not be safe to recommend one.  Every individual is on their own unique journey in their stage of dementia and should to be given the opportunity to demonstrate their cognitive capacity and ability to learn new tasks.  Use of standardised cognitive screening tools can assist with the occupational therapists’ assessment.

A working group was formed in 2016, including NHS occupational therapist’s specialising in mental health (@jacquichung) and stroke rehabilitation (@chungsongyau), and we began to investigate how we could use standardised cognitive screening assessment tools within community occupational therapy practice to enhance our clinical reasoning.  We identified two different tools that were widely used in NHS mental health and stroke services that were appropriate to administer in the person’s home environment. The tools assess key components of cognitive ability in relation to stair lift use and have proven to be effective in enhancing decision making.  Workshops were developed and delivered to all community occupational therapists in Fife and the tools are being used across the service from last year.

This partnership approach has been personally and professionally rewarding and has also helped the service to learn, develop and improve personalised assessments for people living with dementia and other cognitive conditions.  I am also keenly aware of the need to carefully consider how to embed dementia friendly design within the home environment, particularly when planning major adaptations.

I also receive valuable insight and support from the Allied Health Professions’ (AHP) Connecting People, Connecting Support community and I am currently part of a local AHP working group made up of a range of professions with the common ambition to raise awareness, learning and improve services for people in Fife living with dementia.

In an effort to share our progress with other community occupational therapists across Scotland and UK we developed a poster, presented at the Royal College of Occupational Therapist’s annual conference, Alzheimer Scotland Annual Conference and more recently the Royal College of Occupational Therapist’s Special Section for Housing conference.

I was thrilled (if a wee bit self-conscious to be on camera!) to be invited by Elaine Hunter (@elaineahpmh) to represent this work in a series or short films on behalf of Alzheimer Scotland promoting the Allied Health Professions’ role in supporting people with dementia. 

Contributor:

Blog6

Ailsa Dow, Senior Community Occupational Therapist, Fife Health and Social Care Partnership. @DowAilsa

Allied Health Professionals & #Dementia

“I am an allied health professional and I know I make a difference to people’s lives everyday” by Christine.

Christine shares, in this short film clip, how she makes a difference to people’s lives everyday #Dementia.

I am Christine Steel, an AHP Dementia Consultant based within NHS Greater Glasgow and Clyde, and I am delighted to have the opportunity to share this video clip with you.  As you will hear in the film, I am an occupational therapist but one of the best things about my role as an AHP Consultant in an NHS Board, is that I get to work with the full range of allied health professionals including podiatry, radiography, orthotics, dietitians, physiotherapy and so many more.

During my film, you will see I am surrounded by a group of physiotherapists who kindly allowed us to take over their gym in order to show just a fraction of the complex work they do on a daily basis. In fact, complexity was one of the key messages I wanted to convey in the clip.

As humans, we are all complex creatures.  We have individual likes and dislikes, hopes and dreams – and having a diagnosis of dementia doesn’t change that. Hospitals tend to be broken down into departments – you visit ear, nose and throat for your sinus problems or orthopaedics for your broken wrist – and that helps when it comes to navigating what would otherwise be a huge and unwieldy system. But within these diagnostic compartments, AHPs strive to provide individualised treatment plans which recognise a person’s complexity and build on their strengths to achieve the goals that matter to them.

Before filming, during filming and Christine & Helen after filming

To find out more about Scotland’s AHP dementia policy, Connecting People, Connecting Support visit: www.alzscot.org/ahp

Contributor:

Christine Steel, AHP Dementia Consultant, NHS Greater Glasgow & Clyde @Christineahp

Reflections of a partnership approach to a MSc Allied Health Profession dementia module

Introduction:

The start of a new year can often afford the opportunity to reflect personally on professional contexts and, in so doing, map future endeavours.  In my case, I have taken the chance to reflect on our partnership between Queen Margaret University (QMU), Edinburgh and Alzheimer Scotland, connected to the delivery of our MSc Allied Health Professional module entitled:

‘Developing rights-based practice for Allied Health Professionals (AHP) working with people living with dementia, their families and carers’.

Anniversary:

This academic year, 2019/20, marked the five-year anniversary of the first iteration and delivery of the module.  It was first taught during semester 1 of 2015/16, and has run each year since, up to, and including 2019/20, with the final assessed student presentations completed just prior to our mid-winter break.

Over the course of the last five years the module has inevitably evolved, with the focus of our learning and teaching naturally supporting the delivery of learning outcomes. Specifically, the module is designed for AHP practitioners who are interested in adopting, understanding, and gaining an appreciation of what a rights-based approach to their practice might look like.

For example, during 2019 we shared with you a number of blogs, written by former students who had successfully completed the module.  These blogs highlighted the ways learning from the module had been mobilised into practice, influencing and supporting the translation of a rights-based approach.

For example:

Translating a rights-based approach as part of occupational therapy service delivery: https://letstalkaboutdementia.wordpress.com/2019/04/25/embedding-a-rights-based-approach-across-an-occupational-therapy-psychiatry-of-old-age-service/#respond

Prescribing chair sensors in an acute hospital environment, influenced by a rights-based approach: https://letstalkaboutdementia.wordpress.com/2019/05/23/re-considering-the-rights-of-people-living-with-dementia-when-prescribing-chair-sensors-in-an-acute-hospital-ward/

The right to Physiotherapy rehabilitation for people living with dementia following a hip fracture: https://letstalkaboutdementia.wordpress.com/2019/07/04/the-right-to-physiotherapy-rehabilitation-for-people-living-with-dementia-following-a-hip-fracture/

Over the last five years, 51 AHPs have successfully completed the MSc module, from across 11 NHS Integration Joint Boards in Scotland, 4 Scottish Councils, including therapists from 12 different countries.  It has led to a learning opportunity both in class and online that has often been vibrant in sharing multiple perspectives, authentic in understanding the experience of living with dementia through the contribution to learning and teaching by both the Scottish Dementia Working Group (SDWG) and the National Dementia Carers Action Network (NDCAN), and collaborative in reaching towards a common purpose to develop high-quality, responsive, rights-based and person-centred AHP rehabilitation.  It is therefore a module that has become an important part of my professional life and a teaching commitment that has caused me to consider the impact and influence of education to learners, including myself.

Personal reflections:

Education is of course designed to change who we are, or at least, to build and further develop our personal assets to re-shape the world around us,

“the great aim of education is not knowledge, but action”

Herbert Spencer (cited by Meents, 2019)

And to a large extent, the MSc module offers an abundance of evidence that illustrates the actions each student has taken to influence change(s), however small, as part of their practice.  More importantly, the module enables learners to understand how changes in the actions we take can inform and influence the lives of people living with dementia, their families and carers.

From my perspective being part of the module has also changed me.  The opportunity to listen and gain insight into the experience of dementia through the voices of the SDWG and NDCAN has broadened not just what I think, but how I think.  It has deepened further my commitment to equality, including the rights of people diagnosed with dementia to sustain and maintain, for as long as possible, the ways through which they occupy their time, directly influencing health and well-being.  It has also encouraged political participation fostering my engagement in again, admittedly small, but important actions, such as signing up to the Alzheimer Scotland ‘Fair Dementia Care Campaign’, web link available here: https://www.alzscot.org/our-work/campaigning-for-change/current-campaigns/fair-dementia-care

And lastly, the opportunity to listen to the AHP student presentations over the last five years has been a privilege.  The often-small examples of enhancement or improvement embedded as part of the student presentation topics, connected to their perspective, knowledge, and/or experience represents the tools we all collectively hold to encourage changes in our actions, when working with people living with dementia.  For me, being part of this MSc module has reinforced that partnerships in education, to influence practice, matters and that together, our actions as AHPs can make a positive difference when working with people living with dementia, their families and carers.

If you are interested in finding out more about the MSc AHP dementia module, please contact Dr Fiona Maclean: fmaclean@qmu.ac.uk

Contributor

Blog1

Dr Fiona Maclean @MacleanFiona

Senior Lecturer & Programme Lead, MSc (Post Reg.) Occupational Therapy, Division of Occupational Therapy & Arts Therapies, Queen Margaret University, Edinburgh.  I am currently the Programme Leader of the MSc (Post Reg.) occupational therapy at Queen Margaret University, Edinburgh.  I am also an associate member of the Centre for Person-centred Practice Research (CPcPR), which aims to be a world leading centre for research and development in person-centred practice with a focus on innovative new knowledge in nursing and healthcare.

MEENTS M. 2019. Education isn’t simply about achieving a “higher state of knowledge”; it’s about equipping our students with the tools they need to go out into the world and shape it for themselves. [online]. [viewed 03 February 2020]. Available from: https://www.grad.ubc.ca/psi/blog/12/miranda-meents

Power of Attorney – a new year resolution?

Hello, I am Sandra Shields and I am the Alzheimer Scotland Dementia Nurse Consultant in NHS Greater Glasgow and Clyde and a member of the National Alzheimer Scotland Dementia Consultant Group. As a group we are delighted to be blogging in this form each month and I am delighted to be the first in 2020.

Tweet @AlzScotDNC

Blog1

A New Year Resolution

I wonder how many of us are glad to see the end of January? As February approaches how many New Year resolutions have already come and gone? It’s a time when many of us, especially me, give up all the resolutions we made to improve our fitness or maybe our diet. Gym memberships get cancelled, chocolate has crept back into the diet and on we go back to the way we were before. One way I like to succeed at a New Year resolution is to make a to do list, a list of things that need done maybe only once, a list of things I tell myself I should do and would do if only I had the time or the energy. I know this approach helped me when I needed to get Power of Attorney in place.  Can you imagine the distress of knowing it wasn’t in place while asking others to understand how important having this document was for people who have a diagnosis of dementia?

It is part of the Alzheimer Scotland Dementia Consultants role to support people to understand why having a Power of attorney in place is so important for every adult. Having an incident in life when, suddenly, we may not be able to make choices for our self can and does happen, everyone will have heard the quote “Accidents do Happen”  Getting it completed was the easy part, information you may need to do this can be found here: https://www.publicguardian-scotland.gov.uk/general/publications-forms

The harder part was the conversations that I wanted to have.  I want my Power of Attorney (PoA) to make the decisions I would make myself if I could and I don’t want them to be worried about the decision they make. You need to be prepared to discuss some uncomfortable scenarios to really understand what you want for yourself and for the person you have agreed to be Power of Attorney for. The only way to do that is to have an open and honest conversation.

What to choose when completing a Power of Attorney

You can be as specific as you want to be and oh boy was that right up my street. Early in my career someone told me to watch out, as nurses can become a wee bit controlling, and the evidence for how controlling I am is obvious in black and white in this document. I want to be in control even if I am not.

You can choose as much or as little as you want. Anything from veganism, attending church or where to live. I have been clear. My husband will not choose the clothes I wear.  He understood that because I return every item of clothing he has ever bought for me for Christmas. However, I have given him the authority to ask one of my 3 lovely sisters, who will do a great job.

A hospital admission

Coming into hospital can be a very stressful time for all of us. Usually someone is very unwell when the admission is sudden. This is not the time to be thinking of PoA, yet this may be the exact time that it needs to be in place.

When people are in hospital there can be lots of decisions to be made, such as whether to have treatment that could involve risks or side-effects. Medical, Nursing and Allied Health Professional (AHP) staff need to make decisions with you to get the best possible outcome for you and if you can’t help with making decisions then, without PoA, the Doctor in charge of your care will be the person who makes those decision.

Thankfully there is a process that must be followed by law and information on this can be found here https://www.mwcscot.org.uk/law-and-rights/adults-incapacity-act. This “Adults with Incapacity Act” allows the Doctor to make medical decisions on your behalf. They will always do their best to make decisions they believe you would agree with but it is really no substitute for making your own voice heard. These decisions are limited to medical care and do not include other decision about your welfare. Unfortunately, we see people staying in hospital longer than they may need to because no one has the legal power to make a decision on where is best for someone to live after being in hospital.

Do you have PoA on your still to do list? Then don’t panic, make it a late New Year resolution and get it sorted once and for all. 

Contributor

Sandra Shields @sandrewshields

Alzheimer Scotland Nurse Consultant, NHS Greater Glasgow and Clyde.

Blog2