25 January marks World Leprosy Day. In this blog we look at two of the real life stories behind the work of the charity Lepra, which has just received funding from the Big Lottery Fund.
Leprosy is an infectious disease of the skin and nerves which if left untreated can cause disability and blindness. It is one of the world’s oldest diseases however last year 126,913 new cases were diagnosed in India, the highest in the world according to the World Health Organisation.
The Big Lottery Fund is awarding £485,645 to UK charity Lepra to help around 120,000 people suffering from leprosy and elephantiasis in Bihar, India. Elephantiasis, or lymphatic filariasis, is an extremely painful disfiguring disease transmitted though bites of infected mosquitoes, causing the swelling of parts of the body. Lepra’s project will benefit poverty-stricken people through raising community awareness of causes, symptoms and treatment along with improving sanitation and hygiene in 465 villages.
Lepra’s work will help treat people like Kalpana and Sita Devi below:
Kalpana was only 17 when she was married to Nayan Yadav, a soldier in the Indian Army. Due to poverty and tradition, 69 percent of girls in Bihar are still forced to marry against their wishes and before the legal age of 18 years.
A soldier of the Infantry Regiment, Nayan was frequently posted on India’s borders, seeing his family only twice a year. On one such visit he discovered patches on Kalpana’s body and suspected she had leprosy. He was angry that Kalpana’s family kept this from him at the time of their wedding. Her in-laws suspected Kalpana might have inherited the disease from her family. Behind closed doors, Nayan started to beat Kalpana. Other family members ignored her cries. This violence continued for five years.
Kalpana dreaded Nayan’s home-coming. In one such episode, Nayan broke her leg with relentless beating. She was taken to the hospital by her neighbours. After the treatment when Kalpana returned home, she found all her belongings thrown out. Her husband and in-laws asked her to leave their home immediately. With her four-year-old daughter, Anshu Priya, Kalpana returned to the cramped conditions of her parents’ home and has been living there for three years.
Kalpna first came into contact with Lepra in 2011 and received treatment for multi-bacillary leprosy. She has completed the entire course of multi-drug therapy which usually lasts between six months to a year. The patches on her body have completely disappeared and Kalpana, for the first time looks healthy and happy. However, her emotional scars of rejection by her husband and his family continue to torment her.
According to the last Family Health Survey of India, 59% of women in Bihar face domestic violence. A woman is twice as likely to face domestic violence if she has contracted a disease like leprosy or HIV.
With Lepra’s help Kalpana has now filed for divorce, demanding alimony and child maintenance for her daughter, now seven.
Meanwhile, with Lepra’s financial support of Rupees 30,000 (£300), Kalpana has started a small groceries shop attached to her parents’ home. She earns around Rs250-300 (£2.50 – £3) per day and feels proud to contribute to her parents’ household instead of being a burden on them. Anshu Priya is now attending a local primary school and seems to be thriving in her grandparent’s home. This year, Lepra Bihar plans to employ Kalpana as a community ambassador.
Sita Devi’s story:
Sita Devi’s husband is a daily wage labourer, earning roughly 100 rupees a day or less. (£1).
About 10 years ago, Sita Devi’s leg started swelling and became very painful. Her husband took her to see many doctors which resulted in a spending of Rs.5,000 (£500). The doctors didn’t tell them what her condition or disease was and prescribed very expensive injections which the couple couldn’t afford.
Sita Devi was worried about her condition and was deeply unhappy and depressed because she couldn’t leave the house or carry out any household work like cooking, washing or even bathing. She felt isolated and shunned. Her leg continued to swell, her fevers persisted and acute attacks worsened. It was around that time an elderly neighbour who also had the same condition. She approached Sita Devi and mentioned Lepra’s treatment regime. This lady had been on Lepra’s treatment for a while and as a result, the swelling in her leg had substantially reduced.
Accompanied by her husband, Sita Devi went to Lepra in early 2013 where she was diagnosed with lymphatic filariasis and given medication for the fevers. Lepra’s physiotherapist demonstrated self-care techniques that included a set of practices like washing, massaging, exercising and elevation which had to be carried out on a daily basis. Lepra also prescribed her a pair of shoes that were exclusively made for her.
Sita Devi is a much happier person today as she is able to carry out all her household chores and attend social gatherings like weddings or just meeting her friends in the neighbourhood. She said she feels like doing more with her life and is considering buying a cow so she can sell the milk and make some additional money for her household.
She said: “Anyone can get this disease but if we can have the courage to face it we will overcome it and help others too”.
2014 was another busy and varied year for the Big Lottery Fund, which can be clearly seen from the broad mix of stories we featured on the big blog.
In case you missed them, here are our top five most popular blogs from last year.
A personal favourite of the team is a blog from Darren Murinas. In Through my eyes, who am I?, Darren speaks passionately about living with multiple and complex needs, and how he is now using his experiences to support others with similar challenges.
Some interesting 2014 blog stats:
Number of blogs – 78
Busiest month for blogs – June (Big Lottery Fund, 10 years anniversary)
Busiest month for views – October – 2,051 visitors and 3,697 views!
Do you have a favourite blog from last year? Is there anything you’d like us to write about in 2015? Please feel free to leave a comment below.
Abigail Ryan discusses mental health in the third blog of our Improving Futures series. Our Improving Futures programme is funding 26 projects across the UK to transform outcomes for children living in families with multiple and complex needs.
Two years into the evaluation, one area where projects have made limited progress is in improving mental health. Projects have successfully reduced lower level mental health problems such as suspected or reported stress or anxiety, from 45% of families on entry to the programme to 37% on exit.
However the occurrence of other more serious mental health problems increased slightly from 12% to 13% of families upon entry and exit respectively. This includes both adult and child mental health, although it was more common amongst adults.
There are a number of possible explanations for this:
- The increase in families with mental health problems could have been caused by projects identifying the issues, leading to a diagnosis.
- It could be that mental health problems are often too complex to be resolved within a 5½ month period – the average duration of an intervention on this programme.
- Projects may be successfully helping families to manage their mental health problems, but the problems haven’t gone away.
- Or perhaps this kind of family support is not effective in addressing mental health issues or not adequately complemented by specialist local services.
Limited progress in mental health has been a theme across many evaluations of family support services. For example, due to their prevalence among families, the presence of physical and mental health problems will become a focus of work in the expanded government-funded Troubled Families programme. The Family Pathfinder evaluation also notes that families’ “enduring vulnerability should not be underestimated. On exit from support, worklessness and mental health issues remained common concerns.”
This raises the question: is mental health one of the most challenging areas when supporting families?
As the Improving Futures programme continues, the evaluation will explore a number of questions, such as how many families exiting the programme with mental health problems are accessing specialist support during or after their time with the project. It is worth noting that projects highlighted gaps in local service provision for mental health. They sometimes struggled to refer families to other services after a need had been identified due to lack of availability or high eligibility thresholds.
This poses a number of further questions:
- If families are receiving specialist mental health support longer term, are they getting the kind of whole family support that Improving Futures provides?
- Would this whole family support be beneficial and complementary to more intensive or specialist mental health support in the longer term?
- Where is the right balance between family and individualised services?
- Do we need to do much more to increase early intervention service provision around mental health?
Limited progress in improving mental health is an issue that Ecorys will explore further during the remainder of the evaluation, but for now, we’d love to hear your thoughts! Please share your comments below.
Also, keep an eye on our HeadStart programme which will be testing different interventions and ways of working to help young people aged 10-14 learn to be more resilient.
Nigel Brookhouse, Project Director Narthex Centre, Sparkhill talks to us about managing the growing demand for food banks and their plans for the future.
The demand is greater than ever now and we are seeing people from all types of backgrounds come into the centre; homeless, employed and on a low wage or a zero hours contract, single mums, ex-offenders, people who are trafficked here, older people and so on. And then there are those with reasonably well paid jobs and families who have nice company cars, mortgages to pay, school uniforms to buy, mouths to feed and all their other bills on top and they just can’t make ends meet towards the end of the month.
The cost of food has gone up by 37 per cent and wages are not aligning. On average now, we are issuing 80-90 food parcels a week. Over the last three years we have distributed over 120 tonnes of food.
We were the first food bank to be awarded a grant from the Big Lottery Fund, receiving £425,000 through Reaching Communities. This funding enabled us to build a base, buy a van and employ two full-time and one part-time member of staff. We also have 60 very helpful volunteers. This has helped us to give people a life-line, as well as help and hope, and of course it allows them to put food on their table.
When people first come to us, there is a mixture of feelings. Usually they are frustrated by their situation and we have had issues with that, but we put a sign up explaining that we are a service here to help.
On a Monday we usually go out and pick up donations in the van and come back to prepare the food parcels for the week ahead. We have two days a week when we have a drop-in session and members of the public who have been referred come in to see us and we chat to them and find out what’s going on, what their preferences are and if they have any allergies and then we put a food parcel together for them. If they don’t like tinned tomatoes or beans, then we don’t put them in. We can provide hygiene packs now too. A hotel donated toiletries that were no longer of use to them as they had changed their branding. We also had a donation of £180 which enabled us to buy 18 packets of baby milk. There are a lot of new mums out there and this is expensive! We do always need donations and luckily we have been very fortunate so far.
Friday is our crisis day when we respond to immediate demand and simply try to help whoever comes in. At first I thought it would be just a handful of cases, but it’s actually more and more each week on week.
Sometimes there are other reasons which led people here; debt can be one of those. We have an advisor on site now who can offer advice and help people find a solution.
In the foreseeable future we want to apply for continuation funding from the Big Lottery Fund to expand our premises and open up a day centre for those who need shelter and food. We want to address ongoing issues for people, not just help them with the immediate.
Use the Funding Finder, to see if you can apply for funding from the Big Lottery Fund
When we announced our latest round of Awards for All grants this January, we took a look at some of the most common mistakes made when applying for our small grant funding, and how you can avoid them.
It seems obvious, but you’d be amazed by the number of application forms we receive that are incomplete. If your application is not complete then it can’t be assessed. Make sure you thoroughly read through the application guidance first and ensure you answer all the questions in the form.
Again, it might sound simple but please double check that all of your personal information, such as names and addresses are spelled correctly.
The most common application mistakes we see are:
- Contacts not being suitable; ensure your senior contact is able to be legally responsible for any grant we may offer.
- The main and senior contact being the same person.
- Home addresses, dates of birth and landlines not included for both contacts, which includes schools.
- If you are a company, the senior contact needs to be registered as one of at least three unrelated directors at Companies House.
- If you are a registered charity, the senior contact needs to be listed as a trustee and there should be at least three unrelated trustees registered at the Charity Commission.
- The name and address of the organisation not matching what is registered at the Charity Commission or Companies House – we do check this.
- The bank account name not being the same as your organisation’s name.
- The organisation’s incomings and outgoings not being provided.
If you have a great idea for a project and think you might be eligible for funding, please see our website for more information. Any arts, heritage or sports activities that do not meet one or more of our outcomes should apply for funding from another source.
If you have any questions about your application, please call our Big Advice Line on 08454 10 20 30.
Our England Big Advice team wrote this blog’… have you read our other Big Advice blogs?
In the second of our series of blogs on the Improving Futures programme, Abigail Ryan discusses how community volunteers have been building strong and effective relationships with the families they support.
Our Improving Futures programme is funding 26 projects across the UK to transform outcomes for children living in families with multiple and complex needs.
One of the emerging successes of the programme is around projects’ use of community volunteers to support families. Almost half of the Improving Futures projects are using this approach. Volunteers have varying levels of involvement, from overseeing support for families, to providing mentoring, and running peer-led groups.
Projects often found that the biggest success of using community volunteers was that they were able to relate to families.
“We employ people who have the same/similar experiences to those families we work with and who come from the same communities. This enables trusting relationships to be formed between people who share a common language.” (Project manager)
For these reasons, some projects found community volunteers essential to engaging with certain groups and communities. At the Enfield Family Turnaround Project volunteers have been essential to work within the Turkish community, due to the specific cultural and language needs of families. They have also served as role models for families receiving support, because they had experienced similarly difficult circumstances themselves and successfully resolved them. Many projects also think that community volunteers have great potential to support families beyond their involvement in the programme.
The projects told us the key to the success of their volunteers:
- Effective matchmaking between families and volunteers – having a ‘pool’ of volunteers can help to ensure that there is a good match for individual families. Some projects noted the value of male volunteers in particular, for example to work with boys as male role models, or where single dads are the primary carer.
- Developing effective relationships between key workers and volunteers – a strong ‘co-working’ approach can help to ensure consistency in the approach for working with families, whilst recognising that this is an inevitably uneven relationship given key workers’ professional expertise and responsibilities.
- Creating opportunities for progression for volunteers – such as structured opportunities for personal and professional development. Projects have found that this is a good way to make volunteers and mentors feel valued, to build their confidence and maintain their motivation, which is important for their success. It also helps to address challenges around recruitment and retention of volunteers, which has been commonly noted by projects.
So the programme is really showcasing the strengths of community volunteers – engaging with families who might not have engaged with any other service, understanding their needs and building trusting, supportive relationships with them. You can read the executive summary for more information about the findings so far.