Dementia currently affects 1 in 14 people in the UK. Many people will either know someone with dementia, have had to support and care for someone with dementia or have been diagnosed themselves.
NHS England has worked with families, carers, professionals and a range of other stakeholders, to develop new guidance for NHS trusts and foundation trusts (and services commissioned by NHS specialised commissioning) on how to engage and work effectively with families and carers whose loved one has died.
The publication of this national guidance is in response to the Care Quality Commission (CQC) report: ‘Learning, candour and accountability: A review of the way NHS trusts review and investigate the deaths of patients in England‘.
The report emphasised that significant improvements in how trusts engage with families are needed moving forward. These include the recognition that families’ experiences and insights are a valuable source of learning; and that families and carers should be treated as equal partners to identify opportunities for improvement.
Since 2017 NHS England has engaged with over 70 families, NHS Improvement, Care Quality Commission (CQC), NHS trusts, voluntary sector organisations and a range of other stakeholders to gather families’ feedback and comments, which are said to have shaped the guidance. Their comments were gathered through online and offline engagement including listening events, social media, and monthly email updates.
An ‘information for bereaved families’ leaflet, accompanies the guidance, which trusts should share with families following bereavement as a supplement to their own information and resources.
The guidance is only one part of the Learning from Deaths programme and complements other guidance developed as part of the broader programme that the National Quality Board (NQB) is leading. The NQB was established to deliver high-quality care for patients throughout the NHS and is at the interface of health and social care.
This guidance has the potential to produce the dramatic change that the CQC proposed, reducing trauma to the bereaved and giving real meaning to the term ‘learning from deaths’. The change would make sure that a consistent, quality approach to engagement with families is in place across England.
The NHS is there to provide compassionate expert care. Every day we hear stories from patients, and from families of patients, about the care they have received from the NHS. The stories are overwhelmingly positive; they are about lives being saved or transformed, truly dedicated and inspirational staff, and cutting-edge healthcare.
However, we also hear about the experiences of families and carers of those who were harmed or died due to errors in NHS healthcare. These events are tragic and have long-lasting consequences for the families and carers involved. When someone dies, the NHS should minimise the suffering and distress for families. At Anthony Collins Solicitors, we support the new guidance introduced by the NQC to improve how the NHS engages with families and how they improve when things go wrong. We hope that the guidance can begin the process of change that is required to support the bereaved better, and, indeed, all families and carers of patients within the NHS.
If you have concerns regarding the medical care you or a loved one has received, please feel free to contact Stephanie Moustache, nurse and medico-legal advisor. We are happy to speak to you on an initial free, no obligation basis.
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