Real Lives

Having the confidence to ask for good care packages

Jennifer Pearl

Jennifer Pearl has nine years’ experience of health and care services. With her knowledge of Making it Real she knows what to expect from a person-centred approach.

Imagine this. You wake up one morning and find that you are paralysed from the waist down. You spend six months in hospital followed by six weeks with reablement care, return home and before the kettle has boiled for your homecoming cup of tea, realise that no one has actually explained to you what happens next.

This is what happened to Jennifer Pearl nine years ago. The terrifying realisation lingered that the family might need to spend their life savings on her care.

So, what was she to do? What would any of us do? Jennifer phoned friends and family, who unanimously encouraged her to contact what is affectionately referred to as the ‘Filipino network’. Carers, who could be quickly and reliably hired, through word of mouth and for cash in hand.

Fast forward to 2020 when I meet Jennifer for the first time. She is a knowledgeable and engaging woman; works for the Care Quality Commission as an ‘expert by experience’, gives speeches at conferences and has Zoom calls with government departments. Later, I discover she can abseil, fly microlights, zip wire and drive racing cars.

What is Jennifer’s story?

“Once I felt more confident I got in touch with a local care agency. They’re a bit hit and miss but eventually I found a good one.

“I was referred to my local  Clinical Commissioning Group (CCG) who put me on an allocated Personal Health Budget. After a Google search, I found out about the Spinal Injuries Association.

“They’re brilliant.  As are the Backup Trust. Both employ staff with spinal injuries. The Backup Trust helped me acquire wheelchair skills and opened my eyes to many areas of my care that were lacking.”

The Spinal Injuries Association offer an advocacy service, peer support, an online toolkit on Personal Health Budgets, case law guidance, proforma templates, for example care and support plans. Recently they hired a specialist nurse who can be contacted when needed.

Contrast this to the less responsive and inflexible arrangements, which are the norm for most agencies and CCGs.

Jennifer asked for a COVID contingency care plan. The initial response was an abrupt ‘no’ as nothing could be done outside the hours of 9-5 Monday to Friday. She is put to bed at 8pm when the agency care shift ends.

“Staff are often too busy to take a person-centred approach unless  additional staff with the right skills and knowledge are hired.”

Thankfully Jennifer’s GP does take a co-productive approach, he learns from her and regularly contacts the Spinal Centre.

Jennifer thinks there is so much that could be improved within the sector.

“I wish staff  could show more warmth, see me as a whole person, be more proactive and flexible, and, crucially, for people to have the confidence to ask for good care packages, like I did.”

How has Making it Real helped?

TLAP’s Making it Real approach for people who use health, care and housing services includes I statements that reflect what good person-centred care look likes, and We statements for the workforce that align with these principles

For Jennifer, these statements were relevant:

I have care and support that is coordinated and everyone works well together and with me – Flexible and integrated care and support theme

We don’t make assumptions about what people can or cannot do and don’t limit or restrict people’s options – Workforce theme

If you do one thing whilst your kettle boils for a cup of tea, please make the time to look up Making it Real. No one should be left feeling helpless or hopeless on their care pathway.

By Sara Zmertych, Communications Manager at Think Local Act Personal (TLAP)

Edel Harris





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