Hospice helps patients with MND remain living at home

Categories: Care.

Over the last year, Liz Faulkner Manning, senior occupational therapist at Phyllis Tuckwell, has been providing both physical care and practical advice to MND patient Claire Brown, helping her to remain living at home for longer than might otherwise be possible.

Claire’s symptoms first appeared in 2009, but it wasn’t until January 2014 that she was diagnosed with MND.

“There were lots of smokescreens,” Claire said, “lots of other things which my symptoms could have been due to. That’s why it took so long to diagnose.”

However, once Claire had been diagnosed, things suddenly started moving and she was very quickly able to access the appropriate help, including a referral to Phyllis Tuckwell.

“I come to the hospice once a month to see my doctor here. A volunteer driver picks me up, and after my appointment I see my occupational therapist and physiotherapist.”

Claire has also seen a dietician and a speech and language therapist at Phyllis Tuckwell, as well as senior occupational therapist Liz Faulkner Manning who has helped her to manage the practicalities of life, ensuring that she has all the equipment she needs to remain independent for as long as possible.

Some of the first items which Liz provided Claire with were a raised toilet seat, a pressure-relieving mattress topper and a perching stool for the shower.

She also gave advice on a wheelchair and stairlift, which Claire then sourced privately, recommending those which would be most suitable and putting Claire in touch with suppliers.

By planning well in advance, she has been able to ensure that each new piece of equipment has been in place and ready for Claire before she actually needs it.

Planning for the future

As Claire’s condition has progressed, her needs have changed, and she and Liz are now planning for the time when she will be restricted to the ground floor of her house.

Liz has arranged for a hospital bed to be ordered, as she and Claire plan to convert Claire’s dining room into a bedroom, and she has advised Claire on fitting a ramp which will enable her to bring her wheelchair indoors.

“It’s the hospice which has given me the courage to do all this,” Claire says. “The care and services they offer are custom-built for each person. They tell me I’m doing the right thing, and give me help and advice.”

Claire has also had a downstairs shower room installed and Liz has co-ordinated discussions with Surrey Heath Social Services regarding funding for a shower chair and ramp.

She is also liaising with their occupational therapists to arrange for an overhead hoist to be installed in the house, which will enable Claire to move from bed to wheelchair, to shower chair, to armchair on her own.

Accessing additional funding

With Liz’s help, Claire has applied for continued healthcare funding, which now pays for a carer four times a day, with three overnight stays a week.

This means that Claire has help getting washed and dressed in the mornings, accessing the computer so that she can keep in touch with people via email – as her weakening throat muscles are making speech, and therefore telephone conversations, more difficult – and putting on her ventilator mask at night.

Liz has also referred Claire for a specialist services assessment for funding for environmental controls such as turning lights on and off, and calling her carer during the night.

Although Phyllis Tuckwell has been able to supply Claire with some pieces of equipment and offer advice on others, much of Liz’s role as occupational therapist has been to co-ordinate services and refer Claire to other organisations for help with funding.

By constantly thinking ahead, she has managed to keep pace with Claire’s progressive illness and ensure that when Claire needs a new piece of equipment, it is ready and waiting for her.

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