New rules will give patients respite care choice

The week will feature a reception at the Scottish Parliament which will highlight to policymakers the importance of life-enhancing respite breaks for people with long-term conditions and their carers.

At the moment, most people’s social care is managed by their local authority, but new legislation that comes into effect next year will give people greater choice, so they can select the type of support and care that meets their specific needs.

This will mean people can choose to receive direct payments to purchase the support themselves; they can select their support but let the local authority arrange it on their behalf or let the council select the appropriate support and arrange it for them. They can also choose a mixture of these options.

One of our regular guests is well-positioned to explain why the new Act will make a positive difference to the way people access social care services, giving people who are entitled to social care a choice in how they receive and manage it.

Mhairi McCran has a neurological condition and lives with her husband and two teenage children in East Lothian, where she relies on her husband Mark for her increasing care needs.

Mhairi has been identified as needing respite care, for which her local authority already funds her through the direct payment option. Both Mhairi and Mark look forward to her regular stays at Leuchie House and she also makes good use of the day respite facility here.

She said: “The money for respite goes straight into an account and I can make the choices myself about where I want to use it. There’s no-one telling me where I have to go. It gives me the freedom to pick where I want to go and for how long.

“I usually have four stays at Leuchie per year, which gives Mark and the children the break they need and they can go off and do things that I can’t manage in a wheelchair, like playing on the beach. I have also managed to budget for a couple of weekends in accessible hotels with Mark, but we couldn’t do without the Leuchie breaks – they are the first thing I book every time.”

Mhairi enjoys planning her respite breaks and appreciates having the element of financial control back in her life even though her options may have narrowed as her mobility decreases. “I think it’s good that everyone will have the opportunity to make the choices which suit their own lifestyles” she said. “It gives you a feeling that you are in control.”

At Leuchie, we are keen to bring a sense of choice, fairness and equality to people’s access to respite care and from that point of view, the self-directed support plans are a welcome move.

For many people who need respite breaks, their options have been significantly reduced already, as they may have limited mobility and can be reliant on carers for even the most basic tasks. Giving these people some control over their choice of social care is a way of giving them back some independence and respect.

It has not always been the case that local authorities have been able to offer people a wide range of choices when it comes to respite care. There has sometimes been a “one-size-fits-all” attitude and people have been offered unsuitable options, such as residential homes for the elderly, when they may be needing stimulation and social interaction.

Hopefully the new system will allow people to choose the type of care that suits them, rather than always accepting what they are told they need.

Our guests cover a wide range of ages and conditions, such as Huntington’s disease, multiple sclerosis, Parkinson’s, motor neurone disease, stroke and spinal injuries. Respite breaks offer them the opportunity to join in outings and activities or to relax in comfortable surroundings, with 24-hour expert nursing care. There is also accommodation available for carers if they prefer to join their loved one for the break.

Mhairi McCran neatly sums up why she values the ability to choose: “Having the option to come to Leuchie House for respite has enriched our lives as a family. It’s a challenge for all of us living with my condition and we need and deserve time out every now and again.”

• Mairi O’Keefe is chief executive of Leuchie House