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

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

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”.

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

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.

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.

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

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.

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

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”

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

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?

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.

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.”