Woman with MS, 31, told she would be forced to live in a residential home because council couldn’t afford her care Edith Solenne says she has been let down by the system after her MS symptoms worsened and it became harder to manage her life the INews
In 2015, when her MS worsened and she moved into a wheelchair, Edith Solenne made a resolution to fulfil before she turned 30: leave her parents’ home and find her own place to live. She succeeded the following year, but her health soon worsened after an extraordinary battle with her local council over receiving an appropriate care package which, at one point, left her threatened with being forced into a residential care home. It had already taken Edith a year to arrange an initial care package with North Hertfordshire council meaning carers would help her in and out of bed in the mornings and evenings, and to get dressed – something Edith calls “the fundamental life support on which everything else depends”. After reading chemistry at Manchester University, Edith joined KPMG’s graduate accountancy scheme in London. But as her symptoms worsened it became increasingly difficult to manage her life, eventually returning to Hitchin, in Hertfordshire, where she grew up.
No flexibility The one change that would make a big difference to the 31-year-old’s life today would be greater flexibility in the care system – a situation sadly not likely to occur anytime soon. Something else that would make life much easier is more wheelchair-friendly public transport. “As there isn’t, that makes it much harder for me to get around – from work, or the train station. It’s a nightmare and people don’t realise the extent of it. The council say they have wheelchair accessible taxis in the area but if none of them are free you are stuck.
“I use a wheelchair every day so, along with muscle spasticity caused by MS, my muscles get really stiff. In the morning they don’t bend – someone else has to keep pushing their weight against my knee and help me stretch to make my legs and body bend, get me into a sitting position so I can then get out of bed.” However, in February this year, Edith received a letter from her care agency saying that due to staff shortages, they were ending their contract and giving social services 90 days’ notice. “I needed to find a new care agency that could meet my needs. There was nothing I could do as the clock ticked down to the deadline on 11 May,” she said. The council did offer alternative packages with carers arriving at different times than previously, but accepting them would have made it impossible for her to get to her job, having started working at Tesco’s head office. Terrified Edith said: “As the deadline approached, I received an email from my social worker telling me if no agency could be found I would have to move to a residential care home. So I was told to be more ‘flexible’ with times. I was pretty terrified, I felt completely… just lost. I didn’t know what to do.” She “threw everything” at the situation, approaching the MS Society and appearing with a policy manager from the charity on The Victoria Derbyshire Show to discuss her situation. “Even then I didn’t know if that would change anything. I just didn’t know what else to do. It’s not as if I was asking for a spectacular improvement in my care. I just wanted the basics – to be able to get up and go to bed every day.” Just two days before the new deadline, a new care agency with suitable visiting times was found. However, the stress of the situation took its toll and caused Edith to become increasingly ill. “I saw my neurologist that week and was sent for an MRI at the weekend. They didn’t classify it as a relapse, but a stress-induced weakness – a pseudo-relapse they call it. I definitely feel physically weaker now than I felt this time last year.” Resources Edith said the problem lies not with a lack of awareness of MS, but with a dearth of resources at a local level and how much money councils have to spend on their care networks. This Christmas, i has teamed up with the MS Society to raise money for equipment such as laptops, wheelchairs and adaptations to cars. Or it could be used to give a carer a desperately needed break. Edith said: “I knew my social worker was trying to find me carers and she was confined to going to tendered agencies that had won contracts [with the council]. But it made me feel completely helpless. “What worries me is that if this happens again, I don’t know what I could do differently. Did I do something wrong? It feels like such a fragile system. There’s no proper support network – it all feels so thinly held together. Resources are so stretched.”