‘We were very angry today, we are not giving up, we are determined to save our service and we are very shortly going to be holding a protest outside Royal London Hospital.’
Aysha Begum, Bangladeshi Parent Adviser (BPA) campaign leader, was talking to News Line on Monday at the end of a powerful march from Chrisp Street Market in Poplar, east London, to Tower Hamlets Town Hall, which they had briefly occupied.
BPA is a much-needed Community Disability Service funded by the NHS and managed by Tower Hamlets Council, which is threatened with being cut and closed down next week.
Monday’s march assembled at the busy Chrisp Street Market in Poplar at midday.
Speaking over a megaphone, service user Aleya Faruque, said: ‘Good Morning. Thank you all for joining us and thank you for supporting us for such a good reason.
‘Today our destiny brought us here – we are all sufferers in the community. I am a service user. If a child or adult has a disability, the parents are shocked and depressed.
‘The whole family suffers from crisis and needs counselling and therapeutic input. This is what BPA provides. Parents who are using the service have got children with very severe disabilities, some have got two or three children with disability, some have children with limited life.
‘The NHS and Tower Hamlets would have to spend a lot more money if BPA did not help us improve our emotional wellbeing. Our needs are not being addressed by this plan to cut the service. They are being ignored.`
‘For the last year we have been fighting to save our BPA service and now they are planning to cut it from next week. The small team of BPA has a far bigger positive impact in the disabled community.
‘The joint board have no understanding or feeling about our needs.
‘We are being victimised and bullied by the NHS and Tower Hamlets. We are very upset and angry, living in tension and anxiety.’
Anna Livingstone, a local GP in Limehouse, said: ‘We serve Bangladeshi, Somali, English and West Indian families. Cuts in this service will not save money, quite the reverse.
‘It is 100% important we keep and build this service bigger. It’s so important to the families, to the parents. Closure of the service will cost money, cost health and cost lives. ‘Save this service!’
Then the march set off, with chants of: ‘Don’t cut our service! Bangla parents and children need our service! Save our BPA service!’
On the march, Dr Livingstone told News Line: ‘The BPA service is being cut because of the huge debt Barts Health has to pay for its PFI (Private Finance Initiative).
‘They are now £73 million in debt at the end of the financial year and are looking at down-banding and cutting staff. The BPA service has existed for 20 years to provide personalised continuity of support by bilingual professional parent advisers for families with children with severe learning difficulties.
‘I know as a GP how important this service has been for families with the tiring and stressful job of caring for children whom they love. This service actually saves money by helping people attend appointments, use advice from services in the communities. It helps with stress.
‘This service is now being “redesigned”, partly to save money. Staff are being downgraded and spread thinner. Access to regular advisers will be much less. This service needs to be expanded and staff paid properly across the community.
‘Workers need proper consultation, parents feel they haven’t been properly consulted. Today’s demonstration is a powerful expression of families’ needs and appreciation of the service.
‘There must be no cuts to fund the PFI debts. Forty-five of the 70 users are represented here – a very good turnout.’
Aysha Begum said: ‘I’m a parent and a carer who uses the service. It is a vital and unique service, there is no other service like it anywhere in the UK.
‘It provides us with emotional counselling and support. As soon as a child is born with disability there is an immense pressure on the family, which has to be helped. This service is a wonderful service, providing one-to-one home visits.
‘In addition to that, once a week they hold a mothers group when parents can communicate with each other, express their feelings, help each other overcome their fears.
‘Each and every parent has their own needs, all the children are different. The NHS funds the service, Tower Hamlets manage the service and between them they are cutting the service.’
The march arrived and, facing the Town Hall, the marchers shouted: ‘Mayor, please come down – Answer our question! Are we humans, or are we animals? We want answers. Please come down!’
Someone from the Mayor’s office came down and spoke to Aysha.
Speaking over the megaphone, Aysha said: ‘They are trying to say they were not aware that we were coming today. That can’t be true. I personally invited him. He’s deliberately ignoring us. We’ve made numerous attempts to sit with him.
‘The Mayor knew we were coming. We told him we were coming. He’s deliberately ignored us once again.’
Faruk Miah said: ‘They are sitting in their air conditioned room and not paying us any respect at all.
‘The mayor is to blame. I’ve been speaking to the mayor for the last year. He said he would arrange a meeting with us and the NHS and some Tower Hamlet councilllors.
‘He assured us the service would not be cut before such a meeting. He gave us an appointment and then cancelled it.
‘Now they are cutting the service at the end of the month. That is in less than one week.’
Still speaking over the megaphone, Aysha announced: ‘You can’t keep us standing here all day, we need your answer.’
Then she said: ‘Okay, Mayor, you’ve had your chance, we’re coming in,’ and she led the marchers into the Town Hall.
Immediately there was a commotion and security officers came to try to keep the marchers at the entrance, telling them they had to lay down their banners and placards (which they declined to do) and cease their chanting.
Then, at last, someone from the mayor’s office came and said he would organise a room for the marchers if they would just wait a few more minutes.
Later, Aysha explained what happened: ‘Someone on behalf of the mayor gave a speech and said they are going to keep things as planned and close the service at the end of this month.
‘We requested a meeting with the mayor, Luthfur Rahman, and NHS chief executive, Fiona Wheeler, and for them to explain to us.
‘What they tried to say today was that the mayor has no access to the funding so the cut is nothing to do with him.
‘We don’t accept that and are not satisfied with that. We need to sit down face to face and for them to give us answers as to why they are cutting our service without proper consultation.
‘We’ve been requesting this since May last year, when we handed them a petition with 300 signatures. We had an argument with Robert Graham from the council today.
‘We told him clearly we want to know how much is the funding for this service? How much does the service cost?
‘We were very angry today, we are not giving up, we are very shortly going to holding a protest outside Royal London Hospital. Our families can’t survive without this service, the emotional part of it is very helpful, we can’t lose this service, we must win.’