Terminally ill people need around the clock care

by Dr Phil McCarvill Head of Policy Phil-McCarvil_300x300

Terminally ill people are not getting access to the right care when they need it, according to a new survey commissioned by Marie Curie with Doctors.net.uk.

The survey, which reflects the views of 1,000 GPs across the UK, also reveals family doctors’ concerns about supporting their patients being cared for at home. It also reveals that less than half of GPs believe that their terminally ill patients receive adequate access to care at night and at weekends.

Report launch

The issues surrounding around the clock care were also highlighted in a new report published by Marie Curie today, called ‘Difficult Conversations with Dying People and their Families’ . Families reported having to chase after prescriptions, nurses waiting hours for vital drugs to arrive, and locums unable to prescribe. Other key findings from the survey of GPs include:

  • Less than half believe the majority of their terminally ill patients’ pain is relieved completely.

  • A third of GPs believe their terminally ill patients do not get adequate access to specialist palliative care nursing.

  • Of those GPs who do not feel patients get adequate access to pain control at home, more than eight in 10 GPs identified access to 24/7 specialist palliative care rapid response teams as a key answer to improving this.

  • When asked to indicate factors that are likely to reduce quality of pain control, three out of five GPs (59%) opted for lack of anticipatory (just in case) prescribing, over half (53%) expressed concern about over-prescribing medication; while 39% considered poor availability of pain relief out of hours a determining factor. 

Overnight care

Terminally ill people and their families also highlighted concerns about having to make decisions about worrying changes in symptoms or the overall condition during the night and at weekends. The care and support available to terminally ill people and their families must be built around their needs and wishes and not simply delivered in a way which works for service providers. It is clear that the often disjointed health and social care services create a ‘fog’ of confusion. Put simply, many people do not know who does what, when and where – or how to access the support they need. GPs, families and carers are all telling us that more needs to be done to improve access to specialist palliative care and pain control at home.

Pain management

We know that effective pain management at home is an important factor that influences whether someone has a 'good death', and we only have one chance to get it right. With only 17% of terminally people at home having their pain relieved completely, it is vital that healthcare professionals are available to terminally ill people around the clock and that they are equipped to provide pain relief. Terminally ill people and their families need timely access to care and pain relief around the clock to prevent unnecessary crises and distress for all involved. At the moment, two thirds of this time is considered to be ‘out of hours’ by the healthcare system. If terminally ill people are to get the care they need to be at home, GPs, the NHS, social services and voluntary sector professionals all have their part to play.

Unnecessary pain

Our partnership work with the Royal College of General Practitioners is one way we are tackling this, but much more is needed. Terminally ill people should not be spending their last precious weeks and days with the families in unnecessary pain because the system moves too slowly. Terminal illness does not respect the clock. This is why we are calling on those involved in planning, commissioning and delivering services to do more to ensure that 24/7 care is universally accessible for all terminally ill people and their families, no matter where they live in the UK. Read the 'Difficult Conversations with Dying People and their Families' report