Caring for a family member with Profound and Multiple Learning Disabilities (PMLD) is a lifelong journey. 

Imagine you are restricted to a wheelchair - you cannot walk or care for your own needs - you are incontinent and cannot feed yourself. You struggle to make your needs and wishes known...Now imagine providing care for someone with those needs 24 hours per day, 365 days per year, every year for decades: feeding, entertaining, providing medication and therapy - they wake in the night, you need to change them, lift them to move them and you are never off duty. Then imagine doing this for 40 years. This is the situation some of our families are in. 

Often by the time parents reach our service they are physically, emotionally mentally and financially exhausted. They have fought continually over many years to get their children the support they need, alongside managing the day-to-day practicalities of caring for their child, while also running a house and home. On top of this, when young people leave school, their parents often lose practical and emotional support as well as the respite that school can provide for their child.

The Myriad Centre was founded in 2007 in response to a clear need for a specialist PMLD service in Worcestershire. Since our inception our clients have been at the heart of the service: Providing them with a caring, purposeful and joyful space where they can pursue their interests and reach their ambitions. We now provide care and support for 30 individuals and there families.

A holistic approach is required to meet the complex needs of both the individual and their caregivers. The adult social care system recognises this and provides some of the funding for our clients to attend our day centre. This gives families much needed time off, knowing their loved one is in a safe, caring environment. 

Everything we do focuses on taking a person-centred approach to providing high quality care. We are determined to ensure that our clients' experiences go beyond simply being provided with somewhere to spend their day. We are passionate about ensuring that they are valued for who they are as people, and our drive is to ensure that each person is supported in a way that enables them to reach their full potential.

 Our aim is to set the gold standard of care for adults with PMLD. We offer proven therapies and activities such as music and art therapy, physiotherapy and hydrotherapy, alongside a full programme of inclusive and stimulating activity days. Together these activities improve and maintain our clients health, wellbeing, confidence and skills.

 For families we are an advocate, mentor, support system and a lifeline. We are the people who are at the end of the phone, who help advocate for them with social workers, who can support them while they navigate the difficult adult social care system and care about their child as much as they do.

“Myriad is a lifeline for us because Henry* is totally dependent. If he's at home, you’ve got to do everything for him. We've got to do it round the clock 24/7. Whereas when he goes to Myriad we have at least 7-8 hours to ourselves and recover to get ready for Henry to come back to us. And that's very important to us. We couldn't survive without it” Henry's parents.

The financial impact of having a child with profound and multiple learning disabilities (PMLD) can have a significant on families. Key challenges include:

1. - Reduced Employment Opportunities: Many parents or carers may need to reduce their working hours or leave their jobs entirely to provide full-time care, leading to a loss of household income.

2. - Increased Care Costs: The cost of specialised equipment, therapies, and medical care can be substantial. Families may need to pay for things like adapted wheelchairs, communication devices, or home modifications. 

3. - Health-Related Expenses: Frequent medical appointments, specialist visits, and treatments often come with out-of-pocket expenses, even with insurance or public healthcare. 

4. - Travel and Accessibility Costs: The need of accessible transportation and adaptions to vehicles or homes can leased to additional expenses. There may also be costs for travel to appointments at specialist facilities that aren't nearby.

5. - Limited Access to Financial Support: While financial aid may be available through government programs or charities, navigating these systems can be complex, and support may not always cover the full range of expenses. 

The cumulative effect of these factors can create long-term financial strain, especially for families already facing socioeconomic challenges.

 We would like to support the parents’ and carers wellbeing by providing:

• Financial assistance to become Legal Deputies. You can apply to become someone’s deputy if they ‘lack mental capacity’. This means they cannot make a decision for themselves at the time it needs to be made. There are two types of legal deputy 1) Property and financial affairs deputy 2) Personal welfare deputy. This reduces the costs and stress for parents as they have clear legal authority to manage their children’s financial affairs. It also prevents potential exploitation or financial mismanagement by unscrupulous individuals or organisations.
•  Information and advice sessions to support financial knowledge & benefits information including Citizen’s Advice, Carers UK, Transition Services (Transitioning from children’s to adults social services).

The legacy of the project will be to provide lifelong support for carers of individuals with profound and multiple learning disabilities (PMLD), addressing the overwhelming physical, emotional, and financial burdens they face.

*All names have been changed