Jill Cunliffe, Nurse Specialist for Older People, St Helens & Knowsley Teaching Hospital NHS Trust

Background

The Alzheimer’s Society (2009) and the Royal College of Psychiatrists (2010) recognise the importance and absence of tools ensuring consideration of information provided by people with dementia and carers. This information is crucial in guiding care delivery.

Locally, staff groups expressed frustration at inconsistent availability of such information. Significant numbers, with potential for positive interaction with people with dementia, were excluded from current information sharing frameworks.

Complaints analysis suggested poor communication as the most significant factor in dissatisfaction with care.

Informal carers highlighted concerns over the communication of basic information, stating that staff did not have the right information at the right time.

Aim:

The development and implementation of the ‘Forget me not’ document aimed to:

Subsequently:

What did you do?

The project was undertaken by a working group consisting of:

The group considered current documents such as ‘This is Me’ (Alzheimer’s Society), Health Passport (Local Learning Disability Services), and ‘Getting to Know You’ (Local Mental Health Later Life Assessment Services). Although these documents had significant value in the transfer of information between care settings and services, there were issues, which could impede their use within acute hospitals. These included issues around confidentiality and information sharing which would exclude staff groups such as porters, caterers and volunteers from accessing the document.  Some of the documents were lengthy, which would influence staff time, compliance and usage. Others were limited in the scope, value and subjectivity of information.

The ‘Forget me not’ document was developed, and consultation on its format and effectiveness sought from the following:

The document was piloted within the Department of Medicine for Older People and the Medical Assessment Unit prior to its launch throughout the organisation.

Staff with a special interest in the care of people with dementia were supported to implement the document within their workplace. Supporting literature guiding staff and informing carers and patients was developed and distributed.

All documentation was assessed for readability using the Flesch Easy Reading Scale, Flesch Kincaid Grade and the Drivel Defence Text facility from the Plain English Campaign.

The large number of people with dementia who have not received a formal diagnosis is widely acknowledged with up to 50% of those with dementia in acute hospitals being undiagnosed. The working group were keen to avoid the document becoming dependent upon a formalised diagnosis. The document would potentially benefit anyone struggling to communicate needs and preferences for whatever reason. It was decided that the document should not be limited to those with a diagnosis of dementia but be used for anyone who may benefit from improved communication and interaction.

What changed?

The use of the document stimulated the development of a more person-centred culture in areas where it was widely used. This was evident on completion of the observational aspect of the Enhanced National Dementia Audit. 

In areas using the document, care was more anticipatory as staff were more aware of individuals preferences and needs. Significant positive interactions were noted between ancillary staff such as domestic staff, porters, volunteers, caterers and patients as these staff groups now had access to information which could stimulate and facilitate interaction. Within these areas there appeared to be a partnership approach to care.

Within areas observed which were not utilising the document, care appeared to be reactive and task orientated. Both the experience of the patients and the morale of the staff appeared to have a less positive focus. Ancillary staff often had limited interaction with patients. 

There was an increase in demand for training, particularly from staff groups who had previously not sought training in relation to dementia. These included volunteers and catering services. Staff seemed to be realising that caring for people with dementia was everyone’s responsibility and that everyone has the potential to make a difference in the hospital day.

Staff groups began to request a more formalised trigger informing them of the patient’s need for a more specialised level of communication. Radiology staff requested a trigger so that they could ensure that appropriate and suitable appointment times were facilitated for those who may be confused. They anticipated that this would achieve a greater success and compliance rate as well as a more positive patient experience.

Throughout the Trust, the ‘Forget me not’ logo now tells staff that this patient needs a little more time, sensitivity and skill to support their journey through services. 

Emergency Department staff recognise that people with dementia struggle to make sense of their experience within their department. Areas within the department have been modified to be more supportive of those with cognitive impairment. The ‘Forget me not’ logo is again used as a trigger for staff, as well as a ‘way finding’ strategy for those with dementia. ‘Forget me not’ cubicles have large visible clocks, plain curtains, white boards where significant messages for the individual can be written and reminiscence packs which can be used to occupy the individual. 

The initiative has also received positive feedback from CQC inspections, local Primary Care Trusts who are considering the implementation of the ‘Forget me not’  document into care home settings, and carers stating that they felt listened to.

The initiative was also positively received at the recent collaborative conference ‘Making Sense’, with a number of requests for permission to implement the initiative in other acute hospital trusts across Britain.

Advice for others

The simplicity and scope of the document and subsequent initiative has been something that has been embraced by many staff groups. It hasn’t been developed or utilised exclusively for one area or discipline.

By engaging those staff who have the potential to make a real difference to the experience of a person with dementia, the initiative has been driven from ground level. Staff groups such as volunteers, caterers, and chaplains have been able to drive the initiative forward, ensuring both practice, and personal development.

There were no specific funds allocated to drive this initiative. The working group were all involved through their own personal motivations. ‘Champions’ throughout the organisation drove the work forward as part of their current roles, again driven by their own passions. 

Support at Executive level was invaluable.

Funding for some of the environmental initiatives in the Emergency Department was secured from PFI partners, again driven by the motivations and passions of their staff who recognised the potential to improve the experience not only of people with dementia, but of all patients.

There has not yet been any formalised analysis of the benefits of the initiative, although the Trust will take part in the second round of the National Dementia Audit in 2012 and we would expect to see some improvements in outcomes, which can be attributable to this initiative.

For further information please contact Jill Cunliffe at jill.cunliffe@sthk.nhs.uk

See other examples at Dementia - best practice examples.