Angelman syndrome: Mum does press ups to help her care for son
Ivor's condition affects about one in every 15,000 people and means he needs constant supervision, struggles to sleep through the night, cannot speak, understand the word "no" and is not toilet trained. Sarah, 44, said he was a happy, growing boy who loves to cuddle, walk and play, but she needed to stay fit to keep her strength up as he gets bigger. She said: "I actually already feel I'm almost at max, which is pretty damn frightening given I'm only two years into this this whole new world."
Some with Angelman syndrome end up needing two strong carers with them all the time, which seems "extravagant" she said, until you see what it takes to keep them safe.She said: "I'm just taking it a month at a time, but there is going to come a point where we're going to have to ask for extra help in that respect."
"The longer I can do that, the more Ivor can develop, the more I can guide and help him to actually learn to use a step, to get in and out of the bath. "So Ivor and I are kind of like blossoming together and trying to find our own way because we just have to," she said. Sarah said continuing to work as a solicitor had given her a sense of balance and stopped her from becoming "saturated" by her son's disability and what may lie ahead."Everything had been pretty run of the mill pretty normal, very joyful and then you think, 'Oh, my goodness, this is a parallel world like I had no idea existed'."She was suddenly "carer" and had to deal with a myriad of hard-to-navigate forms for medical and social care.
"It's like a bomb hit, and I'm fairly on it," she laughed. "The amount of stuff you've got to do... medical appointments, or just extra stuff like forms to fill in, grant applications, blue badge applications."She described disability living allowance forms as a "complete headache", particularly on top of caring responsibilities and looking after the rest of the family. Sarah said she had a "deep sadness" for her daughters, Bethan, 11, and Olwen, seven, and worried they get less time with their parents. "Ivor pinches, he bites and pulls and messes things up... he's not a normal brother," she said, adding her daughters are also his carers and give her "emotional support".Ivor is now in primary school with his sisters which Sarah said has "helped tremendously" in managing her work and administration of her son's care.
Sarah has scaled back her career as a solicitor to part-time, saying caring for Ivor was a full-time job. "He will always need me, and in weird way that that fills me with joy at the same time as worry, because I will always have a real purpose in my life."She said the one thing she would change would be the "black horror" of a three-year wait for Ivor's diagnosis, and as a campaigner for Foundation for Angelman Syndrome Therapeutics (Fast) has called for a heel prick test for genetic conditions in all babies. She has been joined in these calls by former prime minister Lord Cameron, and said an earlier diagnosis would have given Ivor access to "crucial" therapies.
How to help carers?
Sarah said Ivor's use of touch and eye contact as communication could be intimidating for some.But once you get to know him, as many people do in Monmouth where she and Ivor often walk around town, they find an "innocent nugget of joy", who has had a profound effect on them.The Carers Trust said three in five people would be a carer at some point in their lifetime. A survey of 2,3000 UK families raising disabled or seriously ill children by the charity Family Fund found 44% struggled to meet day-to-day living costs, despite receiving disability benefits. Responses from more than a quarter suggested signs of clinical depression. Family Fund gave financial help to Hannah Leonard, 41, a social care worker looking after a her severely disabled daughter Darcy, six, in Rhyl, Denbighshire.Hannah has achondroplasia, a bone growth disorder that causes dwarfism.Darcy is autistic, with epilepsy and dysphasia, which makes it difficult for her to talk, and also has no sense of danger. She is already nearly as tall as her mum.
"There have been incidents where she has slipped my hand, and she has ran towards an main busy road, and I literally thought, 'I'm gonna lose her here'," she said. "Luckily, the grace of God or whatever it was, she turned."There's no rest time, our doors have to be locked because she's looking for food or she's trying to climb," Hannah said. "You're always on high alert."Parents of children with autism or neurodiverse children have stress levels proven to be that of a combat soldier."
Hannah said her pension-age mum still help with the "things I can't do" and they got "very little help" from the NHS or local authority.She said she had been waiting a year for a social worker and was paying £300 per month for private speech and language therapy, alongside 60-mile (97km) round trips to Liverpool for trampoline physiotherapy to help with her balance. "I think we will need assistance somewhere later on down the line," she said, adding Family Fund paid for a tablet device that helps Darcy to communicate. "Unpaid carers keep this country up," she said.
A report published last week, the first of its kind in the UK, found serious gaps in how care is valued, supported and delivered across Wales.Oxfam Cymru, the Bevan Foundation and Carers Wales published a review of how well Welsh government policies supported carers and care workers – both in adult care and childcare.It said the care system was stretched to breaking point and that Wales falls short on the implementation of almost every aspect of care policy, with patchy progress, disjointed systems and too many people slipping through the cracks.Care keeps Wales running, it said, but many of those providing the care were struggling financially, had poor health and wellbeing and had to cut back on food and heating.
The Welsh government said it was "vital" parents received the support they needed alongside health and social care systems. It said: "We've provided £5.25m this year to maintain our short breaks scheme which has enabled more than 30,000 unpaid carers to have a break from their caring role to pursue a hobby or enjoy a social activity, and the carers support fund which provides carers with emergency financial assistance."
Additional reporting by India Pollock, BBC Wales social affairs correspondent
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
The Independent
11 minutes ago
- The Independent
Wes Streeting believes doctors ‘rushed' to strike
Health Secretary Wes Streeting accused resident doctors of squandering "considerable goodwill" by staging a five-day strike across England. Streeting stated he remains open to negotiations with the British Medical Association 's resident doctors committee, despite accusing them of "rushing" to strike. He reiterated that the government cannot offer pay rises but is prepared to discuss working conditions, career progression, and other financial benefits. The BMA co-chairs urged Streeting to make a credible offer, stating they want this to be their last strike. The strike impacted patients and the NHS, though fewer appointments were postponed compared to previous walkouts, which collectively led to 1.5 million cancellations.
Telegraph
12 minutes ago
- Telegraph
GPs threaten Streeting with winter strike
GPs are threatening winter strikes over Wes Streeting's plan to save the NHS. Leaders of the British Medical Association 's (BMA) GP committee have warned the Health Secretary they will consider re-entering a dispute this autumn if their demands are not met. Family doctors want to lead new 'community hubs' announced as part of Mr Streeting's 10-year health plan, as well as a new funding agreement for practices. They could be joined on the picket lines by other doctors and NHS staff this autumn, with resident doctors – formerly junior doctors – consultants, nurses, and other healthcare workers all eyeing ballots later this year. The threat came as a five-day walkout by junior doctors came to an end on Wednesday morning, with Mr Streeting telling union leaders the strikes were 'self-defeating' and had 'a detrimental impact on patients, your members, your colleagues and the NHS'. But the BMA's GP leaders were undeterred, writing a letter to Mr Streeting and Stephen Kinnock, the health minister, setting out six demands they want met by mid-September to avert industrial action. Family doctors took 'collective action' last year over contract funding, which saw them take 'work-to-rule' measures, such as limiting patient appointments per day and only seeing people in person. The fresh dispute covers pay, contract funding, and how much extra money they will get to work in and to run new health hubs, among other issues. The ambitious health hubs plan to offer a range of services under one roof, including same day GP appointments and walk-in dental slots, but little guidance has been given about who will run them. GPs are said to be 'alarmed' by hospital leaders' early efforts to make themselves central to the plans, sparking a request for clarity on who is in charge as a demand by the BMA. Dr Katie Bramall-Stainer, the chair of the BMA's GP committee, told ministers that the landmark 10-year health plan and current contract situation meant the profession was at a 'critical juncture'. She said the plan, which was unveiled by Sir Keir Starmer at a pilot health hub in east London in July, threatened the existence of 'the traditional NHS partnership model of general practice'. 'The current trajectory threatens the survival of the independent contractor model and, with it, NHS general practice and the trusted family doctor relationship our patients rely on and want to protect,' she said. Dr Bramall-Stainer also said there was 'disappointment and confusion around the Government's failure to explicitly commit or even mention the delivery of a new GMS [General Medical Service] contract within the plan's pages'. GP funding for the current financial year increased by £1bn on the year before following an extra cash injection worth £123m to cover family doctors higher-than-expected 4 per cent pay rise, as revealed by GPonline. The committee voted against re-entering a dispute on July 17 but with a view to holding another vote in September. Its other demands include a reimbursement scheme to reduce the number of GPs who are currently unemployed, despite rising demand for family doctors, an extension of the clinical negligence scheme, and for the Government to be 'explicit in its preference for general practice to lead single neighbourhood providers'. Dr Bramall-Stainer told The Telegraph that the BMA's GP committee 'remains resolute in pressing for urgent action'. 'We will continue to develop a set of clear, deliverable demands – including restoring core funding – and we are actively listening to our members as we consider the next steps,' she said. 'This is a critical juncture whilst the Department of Health is allocating its additional £29bn from the comprehensive spending review between now and the end of August. We look forward to working with Government to secure these solutions.' Mr Streeting is facing pressure from staff across the NHS over pay, with salaries rises ranging from 3.6 per cent for most staff, to 5.4 per cent for junior doctors. The Royal College of Nursing will reveal results on Thursday that show the overwhelming majority of members want to 'reject' its 3.6 per cent rise, with the potential for a ballot on striking later this year. Healthcare workers represented by Unite and GMB trade unions, which represent other staff from paramedics to cleaners, have also rejected the pay award. The BMA's resident doctors' committee is demanding a 29 per cent pay rise to return the medics to 2008 levels of pay – despite receiving a 28.9 per cent uplift in just three years. And consultants are also holding an indicative ballot on their appetite to strike, with results due in September, although this will not give them a mandate for action. The resident doctors also entered a secondary dispute with the Government on Tuesday over 'training bottlenecks'. Data on the scale of disruption is set to be released later this week by the NHS. Tensions between health officials and doctors escalated throughout the strike as the union refused to accept at least 18 emergency strike exemption requests for doctors to return to work. Sir Jim Mackey, the NHS chief executive, accused the BMA of demanding 'extortionate pay' to get striking doctors to help. The BMA said this was 'untrue and unfounded'. A Department of Health spokesman said: 'This Government is fixing the front door of the NHS – we have made great progress together with GPs so far, including recruiting 2000 extra GPs in a year, securing a record funding boost for GP practices, and public satisfaction with GP services is finally on the rise. 'We are committed to working constructively with the BMA's GPC. GPs are front and centre of our 10 Year Health Plan but we can only realise the benefits for general practice by working together.'
BBC News
42 minutes ago
- BBC News
Call to simplify Scottish disability benefits system
Access to Scotland's adult disability benefits should be made easier despite forecasts of a steep increase in claims and costs, an independent review has said.A report commissioned by ministers said the Adult Disability Payment was a "great foundation" which was "significantly more compassionate" than benefits on offer in the rest of the it said too many disabled people still found the system difficult to navigate, and said eligibility criteria should be it stands, the number of people claiming the payment is forecast to grow from 379,000 in 2024-25 to 703,000 in 2030-31. The cost is set to increase to over £5.4bn per year - a price Scottish ministers say they are willing to pay to have a more generous system. The Adult Disability Payment (ADP) was introduced in 2022, a cornerstone of the devolved social security agency which was being set is a regular payment to help people cover the added costs of having a disability or long-term health condition, regardless of whether they are in work or is essentially a replacement for the Personal Independence Payment (PIP), and 99% of cases have now been transferred from the Department of Work and Pensions (DWP) to Social Security actual payments handed out are the same as PIP - a standard weekly award for daily living costs of £73.90, or an enhanced award of £ the review - conducted by Edel Harris, who has led a number of charity and care organisations - said the Scottish approach to assessments was "significantly more compassionate" than the DWP system it said it was "kinder in tone and more dignified in approach".And indeed fully a third of people now getting ADP are new applicants, who had not been in receipt of either PIP or the Disability Living Allowance (DLA).That is only set to grow. The number of people receiving ADP is forecast to surpass 700,000 by the end of the is more than 12% of the Scottish that is not such a large number when the last census suggested 24% of Scots had some form of disability or long-term health problem limiting their day-to-day it carries with it a huge financial spending on social security benefits in Scotland was £5.3bn in 2023-24. It is forecast to hit £7.7bn next year, and £9.4bn by is by far the biggest element of that figure - by 2030-31 it will cost £ context, that is more than ten times the price of the Scottish Child Payment, and more than 30 times the Scottish version of the winter fuel the gap between the ever-increasing cost of these benefits and the funding available in the block grant from Westminster is growing the end of the decade it will hit £2bn - money that Scottish ministers will need to find elsewhere in budgets by cutting from other departments or by increasing taxes. Ms Harris is keen for new applicants to continue to come forward, regardless of the report states that "there is evidence of the economic value of the wellbeing impacts of disability benefits, and these significantly outweigh the financial costs associated with administering them".She says that "not only should we continue to encourage people to apply for Adult Disability Payment, but we also need to make the application process as accessible and anxiety-reducing as possible".The report makes 50 recommendations about simplifying the system and making it easier for people to also argues that eligibility for the payment should be based on "the real life experience of clients and not just on a list of activities".At present, eligibility is based on specific things people might need help with. Examples include preparing food, eating and drinking, washing and bathing, getting dressed and communicating respondents told the review that "having to take the time to highlight issues and what you can't do is depressing, demoralising and unfair", and that "it feels like you're having to beg for help".Ms Harris recommended moving from this system to a bigger-picture approach based on outcomes and equal participation in society. The Scottish government says it will consider the report and set out its formal response in January in many ways they are singing from the same hymn sheet the UK government was endeavouring to restrict eligibility for disability payments - only to perform a series of climbdowns due to backbench revolts - Scottish ministers were very clear that they would not be making any Justice Secretary Shirley-Anne Somerville has stated that she sees benefits as an investment in the people of that language is actually written into the legislation underpinning Social Security underlines the very different approaches taken by the Scottish and UK administrations, both of which are faced with a spiralling bill for working-age benefits at a time of tight budgets and weak UK government has sought to bring the number of claimants - and thus the cost of welfare - down, while maintaining the Chancellor's "fiscal rules" against increasing personal taxes or state say the existing system is broken and that it needs to be made sustainable for future generations, while prioritising those who need help the most. Generous system funded by higher taxes Scottish ministers' generosity will doubtless be popular - in particular with those receiving the payments - but we should not pretend that it was an easy choice to has been funded by higher taxes, with the Scottish system now featuring six different income tax bands which ask higher earners to contribute hundreds or even thousands of pounds more per year than if they lived down latest plan to balance the books involves reducing the public sector workforce by 0.5% per year for the next five Security Scotland itself has been singled out for "important efficiency savings", while health boards have also been asked to make 3% of that is based on the system as it currently stands, prior to consideration of Ms Harris's that is why ministers need another six months to decide how to respond - there is a difficult balancing act to be carried out here, and it will take place at the same time as the government is drawing up its next budget.
