Day care centres were a lifeline for my family. We must keep them open

Apsana Begum

My father arrived in the UK in the 1960s as part of a wave of Bengali immigration into the East End, where he found his first work packing bread at a local Jewish bakery. A natural leader and organiser, he ran a tailoring factory in the clothing trade employing local people, became a businessman selling clothes, then chaired the residents’ association on the council estate where I grew up and served as a school governor. He successfully stood for election as a Labour councillor in 2002, becoming the civic mayor of Tower Hamlets in 2004. Ever the local political activist, it was in the council chamber during a typically passionate debate that my father had a stroke leaving him with significant cognitive and physical disabilities and eventually vascular dementia.

Adult day care centres were a lifeline for my father and my family. For many Bangladeshis, care is seen as something to be retained in the home with immediate family members up to the end of life – studying at a nearby university meant that I could be close to my mother who was primarily caring for my father. Day care took some of the pressure off of us and allowed him to retain his sense of independence, surrounded by people of a similar age and background. True to form, he even began organising among fellow attendees for improvements in the standard of care!

A Bengali language leaflet by the Alzheimer’s Society capturing Mr Ahmed (right) at Sonali Gardens Day Centre, a centre he campaigned for in his ward and later attended in the years before his death.

Across the country, day care centres have been temporarily shut due to coronavirus, further reducing the care being provided to disabled people in an already broken system. Privatisation and the outsourcing of services have led to billions flowing away from those receiving care and instead into the hands of shareholders who expect profits of at least 12%.

At the same time, the government continues to undermine the rights of elderly and disabled people. During the pandemic, despite the need being greater than ever, changes to the Care Act have allowed local authorities to reduce care and support for individuals who rely on provision in the community. Campaigners have highlighted this Disability Awareness Month that coronavirus must not be used as an excuse to water down the rights of disabled people through further cuts to service provision.

This is why it makes me so sad that day care centres in my local area, Tower Hamlets, are now facing permanent closure. The care my father received at Sonali Gardens Day Centre enabled him to spend the last years of his life with dignity as his dementia progressed. The buses that would transport him and others in the morning, and at the end of the day, were also important in this regard. There were opportunities to play board games, participate in competitions and even have a group trip to the seaside. The damage caused by isolation experienced by elderly and disabled people during the pandemic emphasises the importance of retaining these supportive social spaces.

Rather than cutting services, there must be a radical overhaul of our social care system. UNISON, the largest union in the social care sector has called for a National Care Service that will pay all care workers a real living wage and provide equal access to care for all – just like for healthcare in the NHS. But despite many Tory politicians performing their ‘clapping for carers’ over the past year, they have overseen historic funding reductions to social care budgets for years and continue to do so; per person spending on social care for the over 65s fell by 31% between 2010 and 2018.

Former Tower Hamlets civic mayor Manir Uddin Ahmed with the former Bishop of Stepney, the Rt Rev Stephen Oliver, at the opening of the Alzheimer’s Society Tower Hamlets office in 2005.

I saw first hand my father’s decline from an active Labour councillor, dedicated to strengthening his local ward and improving prospects for under-represented communities, to being barely able to remember how to read words or why he had walked out on to the street alone. If he could have seen me stand as a Labour MP on a manifesto committing to free personal care for all older people, he would have said on this what he did then: “What happened to me could happen to anyone, no one should be left without support.”

I will continue to fight for the idea that health and social care should be run in the interests of our communities and accountable to local people. Because closing day care centres is a step backwards in the struggle for equality, a value which my father held so dear.

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