The Cost of Living

While we were in Uganda we heard that my gorgeous sister-in-law had been diagnosed with breast cancer. In Uganda we spent time with friends going through health heartache themselves.  While I don’t want to diminish the enormity of a diagnosis of cancer, my sister-in-law had access to free tests and scans and several consultants, and will have access to a comprehensive treatment programme. Our Ugandan friends were having to fund all their healthcare and for a diagnosis such as cancer, even if services can be found, costs are likely to be prohibitive.

Have you ever looked at health statistics for other countries compared to the UK?  Here’s a few to get you started (from 2013) courtesy of WHO and the World Bank:  

• Life expectancy at birth m/f (years): Uganda  57/61, UK 79/83
•  Probability that a newborn baby will die before reaching age five  (per 1,000 live births): Uganda 66, UK 5
• Probability of dying between 15 and 60 years m/f  (per 1 000 population): Uganda 380/317, UK 88/55

Visit Uganda and you don’t see many older people.  Most families have stories of infant or child death, or death from a preventable/ curable disease.  At camp we had a minute’s silence to remember a sponsored child who had recently died. 

For a rural community the nearest professional health services may be many miles away, people needing to walk or be carried for hours to reach help.  If you’re lucky you can access a bicycle and with money you might afford a motorbike ‘taxi’.  But that’s just the start – you need money to pay for attending a clinic, medication, tests or scans, every night in hospital, surgery, every doctor you see.  If you’re in hospital someone has to look after you – to provide food and do your washing.  Hospitals have areas for relatives to sleep, wash and cook.  And of course your nearest hospital may not provide the specialist care you need – so then there’s more transport and accommodation costs.  

Some healthcare is free…  but the only free clinics we’ve seen weren’t staffed by professional/ trained healthcare workers and medication is scarce. The ‘Global Fund’ provides grants for medication such as antiretroviral therapy (ART) to fight HIV and TB – then you read, ‘Uganda aims to increase coverage of ART to 69 percent of people living with HIV in 2017 from a baseline of 44 percent in 2014’.  Depressing.

We saw a child who lost her feet due to persistent infection and children born with HIV who didn’t have treatment and consequently have on-going health problems. 

We’ve seen children funded by NGOs for a first surgery for congenital problems but then there’s no funding for subsequent surgery – and they have residual deformities and health problems.  When we lost our cases we found all the prescription medications we needed – there was no shortage of drugs, but while the cost was insignificant to us, in some cases one pill can cost half a day’s wages.

And then there’s Global Care.  I was so impressed by local staff.  If children were ill they were taken to clinic. Every day someone took food three times a day to the 6 children admitted to hospital during camp.   Sponsored children have access to medical funds and there is a special fund for major health problems or surgery.  Local staff go out of their way to make sure children are well, and if not, transport them to clinics or hospitals and make sure they have tests, medication or surgery they need. They support families with ill children.

One morning Tom said to me ‘someone wants to see you’.  I turned round and saw a pretty smiling teenager and my heart missed a beat as I recognised *Ekellot. I was telling the team about her on the way up from Kampala as I felt sad thinking about her. I suspected she would have died in the two years since we’d been to Soroti. She had HIV and TB but was seriously depressed and not compliant with her medications.  She was extremely ill, and not improving when we left her even though the local Global Care team were doing all they could to get her medication and watch her taking her pills.  The staff told us that she became too ill to be looked after at the centre and went back to her village. However, the staff had passed her details to TASO (The Aids Support Organisation). TASO provided support and counselling and she became involved in their drama group visiting local schools and youth organisations providing information about HIV/AIDs.  Now she was looking happy and healthy. Yes, I cried! Another girl we know well who has HIV was also looking well and more cheerful than last time we saw her.

Good food, healthcare, transport, love and security, education, working with local communities and support organisations, and overall a commitment to provide for the most vulnerable children, that’s why I support Global Care and why every year we continue with sponsorship.

*name changed and photos not of children written about in this blog! 

Who built the ark?

Since I didn’t get time to write a blog while I was in Uganda, I’ve decided to retrospectively blog about our trip.  Today I‘m going to introduce The Ark.  

According to t’Internet, an ‘ark’ represents something that provides protection and safety.  Think about a group of children needing a safe environment…. and for whom living in Africa makes them particularly vulnerable.  UNICEF say ‘Children with disabilities (CWD) are one of the most marginalized and excluded groups in society’, discriminated against through negative attitudes, inadequate policies and legislation, and often with no rights to healthcare, education and protection.  The World Health Organisation (WHO) claim that ‘Children with disabilities are almost four times more likely to experience violence than non-disabled children’.  In developing countries 90% of CWD do not attend school according to UNESCO.  The UNICEF funded Research study on children with disabilities living in Uganda provide some insight into the situation in Uganda.

Global Care have created a day centre in Soroti, currently caring for 10 CWD.  All The Ark children have physical disabilities, most have mobility issues.  Some have learning disabilities too.  On our visits to Uganda we’ve met many CWD and often been shocked by the way they live.  The children are generally isolated, some locked or hidden away away for hours, or left with relatives and neighbours who don’t care for them properly.  We’ve met guardians who couldn’t work because of looking after a disabled child - further deepening the cycle of poverty and hardship. 

When we arrived at the Soroti Centre this year, having greeted the staff, the next thing I wanted to do was get into The Ark.  We had to finish camp preparations first but then some of us hurried to The Ark. I can’t describe the feeling when I said ‘Hello’ to a child I hadn’t seen for 2 years, and her face was washed with smiles; or when *Simon reached out his arms to be picked up giggling with glee then jumped with excitement as I helped him stand.   *Martha (who is blind) brought tears to my eyes when I stroked her face and she smiled and reached up to touch my hand.   

We all felt emotional as Tom played ‘round and round the garden’ with a blind and deaf child who was previously unresponsive - and she smiled broadly as she was tickled. They are incredibly appealing, responsive, and rewarding children.  I think the whole UK team fell in love with the group and most team members developed a real connection with at least one child.

As the week progressed, we brought the Ark children up to the camp tents where they could listen and watch, or sing and dance.  There was no shortage of volunteers to help carry the children so they could be involved.  We took it in turns to sit with and support these lovable noisy, messy, sometimes difficult to control, children on the mat in the shade.  We managed to help them join in with games and activities. I don’t think any of us will forget the voice singing out ‘Be bold, be strong’ throughout the day or the girl who loved the crafts and wanted her own work folder. My heart skipped when *Acem looked at us and audibly said Hannah’s and my names, mouth and tongue struggling round the words and arms and legs flailing with effort.

These children have such potential – and provide huge reward and joy.  We saw improvements in many of the children from our last visit. I have tremendous awe and respect for the Ugandan team who collect the children each morning and take them home at the end of the day, who feed, change and bathe the children, play with them, talk to them, and teach them songs.

Every time I meet the children in The Ark they challenge me. Challenge my expectations and perceptions, challenge my prejudices and my response to such naked need.  

I know I need to never forget that these 10 are the ‘lucky’ ones, and we need to find ways to fight to improve the situation for many more children with disabilities.  Thank you Global Care for The Ark. Thank you Global Care for a sponsorship scheme that includes children with disabilities. 

*names changed to protect identities