We review a report that highlights the deaths of people facing multiple disadvantage whilst supported by the Fulfilling Lives South East programme.
It can be challenging to think and talk about death, to approach it with sensitivity and dignity whilst at the same time avoiding shying away from the topic. We may be familiar with the statistics that state the average life expectancy for the general population in the UK is at 79 years for males and 83 years for females. The distinct reality is that for people with multiple and complex needs (MCN), the picture is starkly different: life expectancy is at about 42 years for men and 43 for women. There are national studies available on why mortality rates are high within this group, however our own experiences as a service have compelled us to review the situation here in the South East of England.
The Current Landscape
There’s an element of ‘normalisation of death’ within the community of people who have multiple and complex needs. It’s a common occurrence that is often no longer surprising or shocking. Relatively high numbers of people experiencing severe multiple disadvantage, some of the most vulnerable in our community, are dying at a young age. These statistics are far from normal and we believe shouldn’t be viewed as such. At Fulfilling Lives South East (FLSE) we have provided intensive support for people experiencing multiple disadvantage and during this process, clients that we had worked with have died, some at home, some at hospital. As part of our legacy and review of the project we took a closer look into the deaths of our clients. What was happening here, were there any indications or signs that could have been spotted, how (if possible) can we stop this from happening in the future?
Within Sussex (Brighton & Hove, Hastings, and Eastbourne) a higher percentage of clients died whilst in our service compared to the national average (13% of FLSE clients versus 6% within similar MCN programmes nationally). We felt it was important to ask, comparatively, how was it that so many people are dying so young? We know that there are higher rates of deprivation amongst coastal communities. This goes some way to explain perhaps why rates in Brighton and Hove are higher than the national average.
We have produced a report that focuses on clients who died in hospital from ‘natural causes’, as there were no unusual circumstances reported. These natural causes however were due to illnesses related to long term alcohol and substance use, which with the appropriate support could have been avoided. We look closely on the treatable or preventable interventions steps that could have taken place. As well as the barriers around effective prevention, we also shine a light on good practices within progressive initiatives locally. Based on our experience and knowledge we knew we had to respond to the issues raised and highlight some key recommendations aimed at local authorities and healthcare services.
What We Found
The three main themes which ran across this client group based on our analysis were:
• Restricted healthcare access
• Lack of women’s healthcare
• Negative hospital experiences
Through in-depth analysis we found that restricted access to healthcare was a recurring theme in our casework. People experiencing multiple disadvantage often have problems accessing GP and outpatient appointments. For example, those who have had previous violent or aggressive episodes in a healthcare environment would be placed on a ‘Special Patients Scheme’ severely restricting healthcare future access (the system is under review). Additionally, when experiencing daily challenges and chaos in your life (as clients often face), making and attending a GP appointment with a pre-determined time slot is not always easy to stick to.
We also found that MCN clients have multiple long-term chronic conditions, with female clients experiencing more complex and chronic conditions compared to men, and that women are more at risk of premature death. Treatment for women is currently the same as it is for men. But with these glaring variances in health conditions, it should come as no surprise that FLSE along with many other support services have been arguing for women’s specific services for many years.
Finally, we found that negative hospital experiences are commonplace, and amongst those clients that died, our case notes show that the clients faced dismissive, apathetic and a one-size-fits-all type of response. What they required was a more patient, trauma-informed approach. There appears to be an element of being stigmatised that can be extremely unhelpful. In addition to negative encounters, when clients are discharged from hospital there’s a lack of communication between the healthcare providers and the support services clients transition to. These services need to pick up support without the visibility or clarity of what’s really going on with the client both physically and mentally.
Recommendations & Reflections
The top 3 tips to improve health services for people with MCN are:
- Providing services in a flexible way
- A collaborative approach between services (not just signposting)
- Investment in staff training and resources
The Brighton & Hove, Eastbourne and Hastings area has a number of healthcare providers that have been identified as sources of ‘good’ support. Their strategies included:
- being more flexible with regards to access,
- providing effective training,
- offering a more human, kind and trauma-informed approach, and
- involving people with lived experience to give feedback on both strong and inappropriate practices.
We strongly advocate for women-only spaces or women-specific provisions rather than the default status quo of a health and care system that one could argue is mostly designed by men, for men.
Finally, we highlight an inclusive and beneficial initiative called the Intermediate Care Step Away Project which is committed to ensure that when people with MCN enter hospital, they experience support that meets their multiple needs and that they consistently experience a discharge that includes the follow-up community care needed.
Read our detailed report HERE which fully explores the situation and includes reflections from a Clinical Services Manager and Nurse Lead, and case studies which demonstrate the reality of client journeys.
Authors: Nisha Vesuwala
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