Lesley is the Head of Patient Support and Welfare at the AKU Society. The AKU Society helps AKU patients through patient support, community building and medical research.
The cost of living is a worry for most people, and with costs increasing, many within the AKU community are feeling the strain on their budgets. AKU or alkaptonuria, also known as black bone disease, is an extremely rare genetic condition caused by a mutation in one of the chromosomes. AKU affects 1 in every 250,000 people and can cause significant damage to bones, cartilage, and tissues. Diet management is especially important to control the symptoms of AKU alongside medication, so increase in food costs is having a damaging effect on this community. As good as foodbanks are they are not always tailored to people who have additional dietary and nutritional needs like patients within the AKU community.
We spoke to Lesley, Head of Patient Support and Welfare at the AKU Society, about the current cost of living crisis and the effects it is having within their community. “We have recently had a patient reach out and tell us they are really struggling with the cost of living. I believe there are probably more within the AKU community that don't necessarily talk about it or share how it affects them. I think a lot of people right now are thinking, ‘Everybody's in the same boat and I don't want to burden people’ but, I think the further this thing goes on, the more people will say that they are really struggling and need help.”
On top of everything else they are dealing with, the physical and psychological impact of an increased cost of living, which can have a huge effect on individuals’ lives. “Take for example the men in the community who were the main earners in the past, suddenly due to their condition they've either had to give up their job, or they can't do the same job. They've had to retrain; this can affect their income and status in society. Some don't go to work anymore, so they become more isolated. Then, of course, they don't have the income to do the things they used to do. We've seen an increase in this having an impact on the mental wellbeing of our patient group.”
The AKU society has recognised this being an issue and has started to offer a free counselling service.
“I think one of the problems is that a lot of them don't know what to do. Men in particular don't necessarily talk about it; they don't like to admit that they have a problem. This year women's mental health seems to have improved, but I'm seeing it more with the men. When I make my support calls, I often realise that they don't say anything directly, but I can hear from the conversation that something is wrong.”
Lesley tries to get the community to build their own support networks. Some are more successful than others, but having peers who can help them can have a positive impact. “I try to put them in touch and get them to form and develop their support networks, which some of them are very good at, but need a little help and support to do this.” One patient reached out to the charity with concerns for another member of the community. This was successful peer networking which the charity encouraged. They were able to step in and help.
When patients and families reach out to Lesley for help and advice, she does everything she can, including referring them to different organisations for help and even researching what help is available in their local area, usually online and via social media channels. Sometimes due to age and ability access online isn’t always within the reach of everyone. “I often signpost people to turn to us, to make sure they are getting the right benefits and financial help. I also refer them to Disability Rights UK because the fact sheets have always been very good. In the past again, I would say to contact Citizens Advice Bureau, but of course, they're absolutely inundated with people, and you can't always get an appointment.”
In 2012 a clinic was set up in Liverpool for AKU patients and is funded by NHS England. Patients in Wales, Scotland and Northern Ireland can attend the clinic but have to apply for funding from the relevant governments. The clinic runs over a few days and includes a full ‘mot’ health check as AKU is a multi-system condition. However, the funding doesn't include travel expenses and with patients travelling from all over the country it can be out of the reach of some budgets.
“The centre is almost at capacity and the NHS Trust is often stretched financially, As a charity, we don't have the budget to cover travel costs for all patients and we have to assess each individual case. There are several patients who I know wouldn't visit the centre if we didn't cover their travel costs. Although we have covered those costs and sent train tickets, unfortunately, we don't have the resources to do that for everybody. It's becoming increasingly clear that people are finding it difficult to get to the centre, not just because of increased mobility issues restricting their ability to travel, but also because of the travel costs, which are becoming increasingly more expensive.”
Lesley’s main concern at the moment is the knock-on effect the crisis is having and where people will be in the future. “As a charity, it's always about the best interests of our patients, we will always try to help, but we could get to a point where people can't even visit the specialist centre because they don't have the funds and we can't raise the funds to cover them. Ultimately, this will then lead to the centre, treatment and monitoring becoming less accessible to patients who really need it. So that's a big problem for the future and how do we address it.”
As a charity, there is a point where funding is being affected. This will have a huge impact on our community and the help we can offer. “Our charity fundraiser is great. He really does an amazing job in raising money, he's managed to get quite a lot for research and managed to get funding for our patient workshops, but some of the pots of funds are quite specific and can only be used for specific things. People tend to donate to charities like the British Heart Foundation, cancer research and children's charities because they see that it affects a wider community and more people. I think it's getting harder and harder as a rare disease charity that people might not know about, aren’t affected by or believe there isn’t a large enough group of patients, to receive donations. We already have a hard time getting people to donate to us regularly and many people are now looking at cutting their budgets.”
“I think we would always provide for the patient, so if I pick something up, or thought this person is not getting access to food for example, I would speak to our CEO and say, ‘Look, we need to do something.’ I think we will always do that. I believe a lot of charities are and would probably do the same, but it's those small charities that are picking up the pieces. The charity itself will probably then need help if it is to continue to offer the help and support it does.”
Our cost of living project is supported by:
Return to the cost of living page
Read about Rachel
Find out more
The AKU Society
Living with AKU can be challenging, with loss of mobility and pain affecting patients’ physical and mental health. This is why it is so important for the AKU Society to provide support to patients and their families, helping them come to terms with the diagnosis and best manage their condition.
To learn more about the AKU Society, click here.
Source: https://akusociety.org
Alkaptonuria (AKU)
Alkaptonuria, also known as AKU or Black Bone Disease, is an extremely rare genetic condition, which can cause significant damage to the bones, cartilage and tissues of those affected. AKU normally only affects one in every 250,000 people worldwide. AKU is a recessive condition that is caused by a mutation of one chromosome, this means that if two people carry the faulty gene, their child still only has a 25% chance of developing AKU.
AKU stops patients’ bodies from breaking down a chemical called homogentisic acid (HGA) which the body naturally produces during the digestion of food. Due to this, HGA builds up in the body and, over time, leads to black and brittle bones and cartilage, and early onset osteoarthritis. The build up of HGA in the body can also lead to other, sometimes more serious health complications.1
To learn more about Alkaptonuria, click here.
Source: https://akusociety.org