Developing an esprit de corps to transform health and social care services by Allan LEONARD 4 April 2019
I delivered the following speech at a presentation on Integrated Care Partnerships, at a conference event, “Transformation: Paving the Way Forward”, organised by the Northern Ireland Healthcare Leadership Form (NIHLF):
The following article was published in the 2015–16 annual review of the Northern Ireland Chest Heart & Stroke:
Don’t leave carers in the dark
While we often hear what it’s like to fight the long battle of recovery after stroke, we don’t always hear what it’s like to be a carer of someone who is a stroke survivor. We may imagine becoming a carer when we are in our 60s or 70s, but no one imagines they will become a carer in their 40s.
Allan Leonard was just 44 when he became his wife Beverley’s carer. She had suffered a devastating stroke at the age of 40.
After five months in hospital, including the Regional Acquired Brain Injury Unit (RABIU) at Musgrave Park Hospital, Beverley returned home. But that was just the start of Allan’s long and sometimes frustrating experience as a carer.
“I was probably quite naïve about how soon I would be able to return to an ordinary routine. As a carer I never received any brief from anyone at any time in the process. I figured it out — as most carers do — along the way. There doesn’t seem to be anyone in the system who has any responsibility for the carer’s wellbeing, whether physical or mental. There appears to me to be too much reliance on the selfresilience of the carer.
“Once Beverley became stronger, after about a year, I succeeded in negotiating with the Health Trust to exchange some of Beverley’s personal care provision for personal assistance — a care professional who comes out to accompany and supervise activities directed by the client.
“For Beverley, this meant someone to watch her iron clothes, for example, or to go for short assisted walks in a nearby park.”
Inspired by his wife, Allan was determined to reclaim as much of his own life as practical, whilst accepting their new situation. “Many family carers are so overwhelmed with the enormity of the caring task they don’t take care of themselves. Beverley’s personal care provision meant that I could then spend more time and attention taking care of myself.”
And they both want “to turn something bad into something good,” as Allan put it. From his carer’s perspective, this includes him wanting an honest appreciation by health professionals of the carer’s role in the design of healthcare pathways. He does this by sitting on an Integrated Care Partnership for Ards, along with his wife.
Allan also attends a stroke carers’ group at NICHS, which he said has been useful:
“As with anyone dealing with a traumatic event in their lives, it helps to meet up with others in a similar situation. I suppose that I’m a more conspicuous member of the group — a younger male — but there’s usually someone else who gives me perspective, and the sincerity and goodwill by the staff, volunteers and all reminds me that I’m not alone.”
Caring can take a great physical and emotional toll on a person. If you are a carer, you need to make time for yourself when possible. Relaxing can help stave off feelings of anxiety, stress and even depression. There’s lots of help available.
I was part of a five-member panel of stroke survivors and carers who presented short stories of our perspectives, to an audience of delegates at the fifth Northern Ireland conference organised between the Northern Ireland Multidisciplinary Association for Stroke Teams (NIMAST) and the UK Stroke Forum (UKSF), held at La Mon Hotel, Belfast.
I told a story at the Tenx9 event at Belfast’s Black Box venue. Tenx9 is a series of monthly events, where nine individuals tell a true, personal story, for up to ten minutes (hence the title). There are six Tenx9 city sites to date (why not start your own!); the Belfast series is led by Padraig and Paul.
Earlier this week, Madame Oui (aka my awesome wife Beverley) went up to Parliament Buildings to address a group of MLAs at the Northern Ireland Assembly. It was a very positive and constructive meeting, resulting in some agreed steps forward (next stop: the Assembly’s Health Committee).
Beverley later remarked, “I’ve become a campaigner!” And one off to a great start. Watch out, here she comes.
Here is her first press statement:
Integrate emotional support says stroke survivor by Beverley Beattie 31 May 2013
On the back of an investigative report by the Stroke Association into the emotional impact of stroke, survivor Beverley Beattie told a group of elected representatives of the Northern Ireland Assembly that psychological and emotional support services should be integrated:
“There are two major dimensions of having a stroke — physical and emotional. The first appears well organised in Northern Ireland, from physio, occupational, and speech and language therapy.
“But I have discovered that emotional support comes much later, and it shouldn’t.
“I was fortunate with my community stroke team, but this shouldn’t be a postcode lottery, particularly for a relatively small place like Northern Ireland.”
Beverley called for the implementation of the approved regional stroke strategy, which includes adequately funding these supportive services:
“The community stroke team at Bangor Community Hospital is helping me, with a recovery approach of the Bridges Programme.
“I want to be sure that such services are available to everyone, regardless of where they happen to live in Northern Ireland.”
Accompanying Beverley was her husband, Allan Leonard, and Northern Ireland Director of the Stroke Association, Tom Richardson.
Allan highlighted an apparent disparity, whereby NHS psychological services are part of non-stroke, community brain injury teams, but not in stroke-based community stroke teams.
Allan called for this gap in provision to be closed:
“A brain injury is a brain injury, however it is caused, and all those who have had a brain injury will have psychological and emotional challenges to face.
“I don’t understand why brain injuries caused by stroke would be treated differently in this regard.
Tom Richardson added:
“The provision of clinical psychologists for the Stroke Services for Belfast as well as the South Eastern Health & Social Care Trusts are to be commended.
“We need to ensure that this is extended throughout the province, as it is vital for the quality of stroke survivors’ after-stroke recovery.
“Indeed, as Beverley has demonstrated the benefits of very positive and excellent practices here, there is no reason why we cannot connect the dots with the hospitals, GPs, community care and charity services throughout Northern Ireland.
“It really is a case of picking some low hanging fruit in order to achieve excellence in the full treatment of stroke injuries — physical and emotional — so that survivors like Beverley can reintegrate with satisfaction as fully contributing and productive members of society.”
The all-party group meeting at the Northern Ireland Assembly was held on Tuesday, 28 May 2013. Those attending included: Robin NEWTON MLA, Roy BEGGS MLA, Anna LO MLA, Kieran McCARTHY MLA, Alan McDOWELL, Tom RICHARDSON, Beverley BEATTIE and Allan LEONARD. Apologies were received from Conall McDEVITT MLA and Steven AGNEW MLA.