1. A Carer’s Perspective (Both Professional and Personal)
Andrea Ramsey
Director and Carer
Carrick Home Care

2. Experience Many patients over the years, including several with MND
Working both as a manager, organising the best care I can, and as a hands-on carer too
Most people see the physical activity of the job, but fail to realise that even as professional carers we still care and become attached to our patients
But, at the end of the day, professional carers can, and do, leave the care setting and walk out the door

3. One recent patient summarised Carers as follows
“They get me out of bed. They wash, dry and dress me. They make my breakfast, lunch and sometimes dinner too. They physically feed me. They administer my cocktail of drugs. They help me on and off the loo. They are my hands, arms and legs. They are my independence, my freedom. Paralysed by the terminal, progressive and debilitating motor neurone disease, I am dependent on carers”.

4. A different perspective on caring
Young man,
Diagnosed in his late 20s
Full of life and fun he lived almost 3 years after diagnosis
He loved travel
BUT – for travel he needed 24/7 care
Found myself in the role of many spouses, partners and family members, caring 24/7

5. 24/7 caring No let-up. I scheduled my showers around him
- even my own toilet trips.
I set my alarm in the middle of the night
The responsibility was huge.
Back home after 5 or 6 days doing 24/7 caring I would crawl into bed and sleep the next day.
At least I could do that. I could turn off for a day or two.

6. 24/7 care isn’t restricted only to those affected by MND
I see this every day in my work.
husbands looking after wives,
children looking after their parents
parents looking after their grown up children.
Often their only respite is my carers coming into their homes.
That is the hidden value of care for the full time carers
eases their burden of care and responsibility,
- if only for the duration of the visit.

7. Improving Patient and Partner Centred Care
Individual assessment of needs and abilities
Understand the patient’s routine
Small care team essential
Especially where there are communication problems
(Can be stressful for new carers)
Expect (and anticipate) deterioration
Physical deterioration brings greater care needs
Hours required
Range of activities
Intimacy - another reason for a small team

8. Emotions Carers get physically tired, but
MND patients can become rapidly fatigued
Those cared for often try to pretend to relatives and friends they are doing better than they are
When the show is over, the carer picks up the pieces or gets the pent up resentment.

9. Emotional Lability Uncontrolled laughter, crying or both
Can be triggered by stressful situations, e.g.
Stress itself
Communication difficulties
Can lead to spasms

10. Independence Carers facilitate non-institutional living
Help with letters, phone calls, GP visits
Interpreting when there are speech problems
Helping with every day activities
Trips out, walking the dog, shopping
Carers can often be the only visitors
Vital for recognising early infections
More vital for overcoming “It’s nothing, it’ll heal”

11. Rewards Few financial rewards for carers
High responsibility levels
High physical demands
High staff turnovers
Devastating to patients
Yet carers save on institutional care and hospital admissions
Better for the patients
Better for NHS budgets

12. MND Care is specialised
Additional training needs
Additional costs
Training to care for patients with gastrostomies
Specialist hoisting
Non invasive ventilation
Communication aids
Where are the training courses for these?

13. Care for the future Needs more than to tinker around the edges
Needs to be better structured than it is with better training opportunities for carers
Council services are stretched as it is
Needs support from all professionals
Often the carers are the ones that notice a developing need first.

14. A thought….
I’ve worked in the pharmaceutical industry and the civil service but I’ve never seen a better appraisal than this….
“They are company, they are friends, they make me laugh. On my down days they cheer me up.”