The stories in the Learning together series were created at Princes Alexandra Hospital, Harlow, in November 2012 at Patient Voices workshops that formed part of the NHS Patient Feedback Challenge Both Sides NOW! project. The NHS Patient Feedback Challenge is intended to promote existing best practice in patient engagement and feedback. It is funded by the UK Department of Health and run by the NHS Institute for Innovation and Improvement. The Both Sides NOW! project is led by NHS North East London and the City on behalf of the NHS Institute for Innovation and Improvement. Pilgrim Projects/Patient Voices is a Specialist Collaborator on the project, with responsibility for facilitating the digital storytelling workshops at which patients and staff from the three spread partners create their digital stories. As part of the project, pairs of Patient Voices workshops (for patients and staff) were held at each of three Spread Partner sites, one of which is Princess Alexandra Hospital, Harlow. During the three-day workshops, participants are helped to create their own digital stories about their experiences of delivering or receiving care. After the stories have been created within the Patient Voices workshops, the issues within the stories are themed and coded, and the stories are then taken back to the Spread Partner organisation as the underpinning basis for a quality improvement intervention. More information on the NHS Patient Feedback Challenge can be found here.
There are some processes when care professionals get just one chance at doing it right. End of life is one of these. After the shock of hearing how poorly her profession can deal with end of life in some cases, one professional’s faith is restored by both her own personal experiences of the death of a loved one, and by seeing how caring professionalism can ease the loss of a child for a couple with learning disabilities.
Why can’t we get this right?
As a learning disability nurse, Andy is dedicated to ensuring that patients’ experiences are as good as possible. But sometimes, even the most carefully-crafted protocols fail to ensure things go right for his clients. How do we get this right for patients? How do we get this right for staff?
Sink or swim?
Working in PPI, Kerry is aware of the difficulties and barriers to diagnosis and care faced by those with learning disabilities. Her own experiences of diagnosis and care for her Multiple Sclerosis bring this home to her. If the process is so hard for her young, intelligent and working within the system what is it like for those of her clients who have a learning disability?
The interactions between staff and patients can be richly-laden with misunderstanding, misapprehension and fear. When a terrified patient with learning disabilities reacts badly to a clinical situation he doesn’t understand, Carol has to use all her experience, empathy and skills to bring about a positive resolution to a difficult experience for all concerned.
The reliable, accurate and timely flow of information is nowhere more important than when dealing with service users with learning disabilities. The purple folders that Caroline looks after can help and protect both patients and staff, but the phone still keeps ringing
When a man with learning disabilities donates his lungs to a man who will die without them, he passes on another, equally valuable gift that is, in turn, valued and appreciated.
Letter to the CEO
As a service user with a learning disability, Matthew knows the hospital thoroughly. He sees it though different eyes that can lend a new perspective and valuable insight. The community has given him much support, and he would like to give something back to the community in return.
Because he’s my son
Sue is a lawyer. Her son, Matthew has learning disabilities. After 32 years, she still finds herself following ambulances not because she is a lawyer, but because, as a mother she is only too aware of the poor care that has and still could, be received by her son.
Seeing people for who they are
Many patients can feel invisible, or seem indistinguishable, Working in PALs means that Estelle has to see everyone for who they are and everyone’s needs as what they are, whether they are young or old, and whether they have a physical or learning disability or not.