A deeper look into concerns about the healthcare system’s response to people with multiple and complex needs

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Our learning so far

Fulfilling Lives (FL) is committed to supporting Systems Change in Healthcare services and structures for people with multiple and complex needs (MCN). We recognise that it isn’t an easy task to influence large systems like the NHS  but at the same time we would like to encourage workers from all organisations and services to feel confident in escalating concerns about the healthcare system on behalf of their clients as we see this as an opportunity to bring about positive change: it is a way to log learning, share it and look to explore resolutions That is why one of our goals is for ‘Workers who support clients with MCN will be informed and empowered to use official systems to challenge and escalate unsatisfactory responses and care.’

Over the last six years, our specialist workers have supported numerous clients in Brighton and Hove, Eastbourne and Hastings to access primary and secondary healthcare services, including psychological healthcare services.

According to our workers, it has been clear that our clients have low expectations when it comes to healthcare support. This includes how they expect to be treated by staff. Sadly, some of our clients’ experiences only reinforce these low expectations.  For example, one client was transferred from temporary accommodation into a care home setting. Within 24 hrs, the client’s GP cancelled the daily prescriptions without giving the new GP and pharmacy time to transition his care effectively and get the prescription ready. Other examples include stigmatising practice observed by the specialist workers and challenges for clients to access the care they need. Not all our clients’ experiences are negative. On a different occasion, one of our support workers encouraged a client to make an appointment at a GP practice – something they were fearful of doing. On arrival at the surgery the client was reluctant to check in with the receptionist, but with some persuasion he did. In contrast to his expectation the receptionist welcomed him and understanding his anxiety stated we could wait in the quieter areas of the waiting room and she would come and get us when he was called in. Then, the nurse and GP saw this client as a person (not just a file) and this whole experience gave the client the confidence to return for the follow up appointment and make and attend several more.

How we are responding and why bother?

We value our specialist workers and their role to not only find solutions to healthcare issues faced by our clients on a daily basis but we also appreciate their role in advocating on their behalf and raise concerns when they observe concerns. But we needed more data to check if concerns are isolated cases or whether these concerns are more frequent across the local areas and pointed to something more systematic. That is why FL has launched the internal ‘OOPS’ (overcome obstacles, provide solutions) Project in December 2020, where specialist workers can log observed concerns, get peer support through regular Sub Group meetings and identify trends of concerns and solutions to these concerns together.

The Systems Change Team was keen to understand better the concerns that our Specialist Workers have when it comes to supporting clients through healthcare issues. These concerns might not always be about writing an official complaint to a healthcare professional, but to observe daily obstacles within the system. This might range from not being able to make an appointment with a GP on a client’s behalf, to keeping track about hospital discharges happening on a Friday afternoon for those who are homeless. Usually, these frustrations aren’t recorded but we see them as small cracks within the wider healthcare system. 

The OOPS Project launched in December 2020 and between then and early March 2021 we recorded 7 key concerns in Brighton, Hastings and Eastbourne.

Concerns raised

Here are the type of concerns raised:

• Health provision in prison – Not being able to get an appointment with the mental health assessment team to review our client’s treatment.

• Access to pharmacies and dispensing during Covid 19 – Dispensing bulk prescriptions, such as methadone, during lockdown instead of individual dosages.Another client has been banned from most pharmacies and the only one our client can access is 2 hrs drive away.

• Transitions between GP surgeries – One of our clients has been transferred into a care home in a different area which meant that the GP has cancelled all prescriptions within 24 hrs of the move due to being out of area.

• Access to the perinatal mental health team – One of our clients has had a child removed after giving birth and the perinatal mental health team can’t support the client as they only work with mothers who keep their children.

• Support staff response to client engagement challenges – A client with a coexisting condition of substance use and mental ill health was referred to SPFT for mental health support. The worker tried to contact the client 3 times but wasn’t able to reach them which resulted in a frustrated email to our specialist worker. However, the client did leave a message for SPFT but the message wasn’t followed up on. 

• Hospital discharge and follow on rehab – Our team felt there has been a lack of effective joining up of services for a client being discharged from hospital due to alcohol cirrhosis and the rehab services. After the detox in hospital, the transition was not as smooth as it could have been – consuming alcohol could have fatal consequences and this was a high risk.

Raising concerns in the context of the pandemic

It’s now been a year since the pandemic hit the UK and in March of 2020 there was a push to get the homeless communities into emergency accommodation, which created its own issues and problems. Some organisations blanket prescribed a two-week supply of methadone to recipients but ceased face to face appointments, testing and offered limited phone contact.

With most services suspending all face to face interactions with people and an emphasis placed on the wider use of digital devices and phone contact, those with MCN have been left to manage with minimal or no support from the statutory and many non-statutory health services. This has meant that clients and services often relied on FL specialist workers who continued face to face support to escalate concerns and advocate on our clients’ behalf. The pandemic has shown the health inequalities in our society and people experiencing MCN fall through the net. Raising concerns, when resources are thin on the ground, involves having emotional energy and lots of patience as well as time to get them resolved. With FL client-facing work ending in June 2021, FL specialist workers continue to focus on the best outcome for their clients, which in some cases means circumnavigating the system because complaints’ systems are felt to be slow and difficult to navigate.

One of our Specialist workers said: “The NHS closed everything from GP surgeries to wards, with their focus on Covid-19.  Initially it was impossible to contact any NHS services and as time went on this did not get any easier, again there was a desire to make everything online.  I found accessing my GP, virtually, easy but then I have access to a computer and the internet, as do many other people but many of our clients do not have smartphones or access to the internet, many are not computer literate and some find having a conversation by phone to be very distressing.  I supported a client to make an appointment to see his GP, yet despite me speaking with the surgery about the difficulties he experiences when talking on the phone, the surgery arranged a phone consultation, which resulted in my client feeling he had wasted everyone’s time and he did not discuss what he wanted to with the doctor. The media also created fear and a sense that the NHS was not to be disturbed, so many clients and members of the public in general ignored health issues.”

Useful resources when making a complaint

Obviously, sometimes an official complaint needs to be made and there are different guidelines on how to make a successful complaint. We’ve listed ways to do this below to help client-facing workers have a useful summary of the existing support and guidance to do this.

Local hospitals have a Patient Advice and Liaison Service (PALS). This service can give you information about the hospital’s complaints procedure.
It is important that you complain directly to the person or service (such as your GP or dentist). 

A challenge is often finding out what a services complaints procedure is, obviously there is a generic NHS complaints policy.

As a worker or individual, you can also complain to your local Clinical Commissioning Group (CCG), who funds the local healthcare services. This would be after all other options have been exhausted.

The Advocacy People (formerly SEAP) is the commissioned health complaints and advocacy service for East Sussex.  During the Covid-19 restrictions making referrals has become more difficult and at times communication with the service has been limited.

If the above has failed, then there’s also the option to contact your local MP.

Your local Citizen Advice Bureau or Healthwatch can support you and guide you when making a complaint.

The Ombudsman can also help if a complaint is first logged with the provider directly but the outcome hasn’t been satisfactory. They can make independent and impartial decisions on complaints and they have created a useful leaflet with the top 10 tips on making a complaint to the NHS England.
Tips on making a complaint to the NHS in England | Parliamentary and Health Service Ombudsman (PHSO)

What next?

We plan to continue with the OOPS project for a further 3 months and use this learning to further inform our understanding of the gaps and barriers in the healthcare system facing people with MCN. However, we hope to pair this learning with conversations with partners to explore how we can shed greater light on key concerns and start conversations about how we can collaborate to resolve them.

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If you would like to hear more about our work in healthcare, then please do get in contact with Michaela and Rebecca in the FL team:

Michaela Rossmann, Systems Change Officer: michaela.rossmann@sefulfillinglives.org.uk

Rebecca Rieley, Systems Change Lead: rebecca.rieley@sefulfillinglives.org.uk