A family in urgent need of emergency respite care was shocked to find that the service was no longer available in Brighton and Hove.
Meredith McGill contacted Brighton and Hove City Council for urgent help with respite care for her autistic 14-year-old son, who has complex needs, after her husband Scott, 55, had a heart attack on Saturday 16 July.
When she contacted her social worker asking for emergency respite care for her son, Mrs McGill was told that the service was no longer available even though the council’s website states that an emergency bed was available at a residential home in Drove Road, Portslade.
Almost two weeks on, the family has still not been given any support to help ease the stress as Mr McGill recovers at home.
Mrs McGill’s son, who she asked not to be named, has routine respite care at Drove Road four times a month to give his parents a break.
He is unable to speak and has severe learning disabilities and multiple anxiety disorders. He needs support from two adults when he is out in the community.
In the past, his respite sessions have been cancelled to allow other families to receive emergency care so Mrs McGill was shocked when she could not have the same help.
She said: “What I worry about is it’s not just my family. If there is ever a time that families like mine could end up in crisis, it’s typically over the summer holidays.
“Our children are without school, without their routine and predictability. Parents are without respite, so this does affect us. This is going to affect anyone in a crisis who is in need of support.
“In the past, several stays were cancelled due to emergency respite. We knew it was offered, so that’s why I assumed it would be available to us.
“Whenever our child’s stays were cancelled, we never complained because we knew one day that could be us. Now it is us, there is no help. There is no emergency respite.”
The council has offered extra time with a personal assistant (PA) and at the Extratime holiday club for youngsters with special needs but Mrs McGill said there are no PAs available or any space at the holiday club.
When a placement was proposed outside Brighton and Hove, Mrs McGill said: “I became hysterical. My son is autistic with a severe learning disability. He would not understand why he was being sent to a strange facility.
“He wouldn’t know where he was, why he was there and when or whether he was coming home.”
At this point, she asked her son’s specialist, Paramala Santosh, to intervene. Professor Santosh is also the specialist who cares for former model Katie Price’s son Harvey at the Maudsley Hospital.
A letter to the council’s disability social services team recommended emergency respite care due to the teenager’s “highly complex medical and co-morbid neurodevelopmental, neuropsychiatric disorders and associated severe learning/intellectual disabilities”.
The Labour MP for Hove, Peter Kyle, has taken up Mrs McGill’s case and is concerned that no emergency respite care is available.
He said: “If anyone thinks that the McGill family don’t need respite care, and what is happening to them demonstrates clearly that the system is broken, then I invite them to my office in Hove to hear from me what this family are going through.
“I will move heaven and earth to get this family what they so badly need but I also want to reassure people that I am also taking this up in Parliament with the Health and Social Care Minister to try to prevent such a terrible situation from happening to other families in the future.”
The council said: “We are sorry to hear the difficulty that Mrs McGill and her family are currently going through. We recognise the family is in under acute pressure at the moment and we are trying hard to work with the family and address their needs.
“We do have a number of respite beds but unfortunately there are none available with short notice.
“We would like to be able to offer respite provision to more families in need. But because of the huge cuts in government funding the council has experienced over the last 10 years or more, this simply isn’t possible.
“Emergency residential respite beds do not exist locally or nationally in the form that is being asked for by the family.
“Due to the nature of respite, this is agreed with families well in advance, with children having a set number of days a month.
“In order to offer emergency respite in this instance, it would mean that children already booked into the respite provision would have to be cancelled in order to free up space. This would significantly impact on other children and their families.
“When families have an emergency, we will work with the family to look at what support is needed and how we can assist.
“We are looking at other support services and have approached the family with alternative solutions. We have made them a number of offers of support and we will continue to try to work positively with them.
“We always work to try to keep families together as that is normally in the best interests of the child.”
Yes there is underfunding because too many people have voted for parties that take money and support directly from disabled children and the support round them. In an emergency, however, that does not allow the Council to come up with stock excuses. They are not acting in the best interests of either the child or family who need exactly what they have asked for. Great Peter Kyle is supporting but I also hope EVERY councillor puts their weight on the situation to resolve quickly.
Do you have any suggestions for what could be done, exactly? Cancel another child’s care? Send this child out of area, and if so to where? Pay for private care, and if so where and for how much (especially given the rollicking the council are getting over contracts now)?
It’s not a stock excuse, it’s a common refrain, because our public services are being deliberately sabotaged at the highest levels.
Martin Jones
Yes there is underfunding because a succession of BHCC councils wasted vast sums on vanity projects or failures to spend wisely or collect monies owed to it.
Reference, i360, 35K spent on prevention of F.O.I.
Thousands spent on badges because Harry wants to know as a tree.
Thousands lost from parking fees taken by a third party.
Thousands lost due to changes to Home to school transport that was a fiasco.
£5 million spent on Stanmer Park putting in car parks and Parking Ticket machines.
Councillors overclaiming expenses is the current ‘mis-management’ of funds, the list of wastage goes on and on.
The council is allocated a budget, they alone allocate it to where it’s needed, certainly not on vanity projects.
Correct too many people have voted for a council that couldn’t care less about local people and as expected the Council will come up with stock excuses. These usually are Government cuts, Brexit, Covid, short of staff, our contractor was to blame, wrong type of weather, and reference to a park and ride scheme we’re scared in case local people actually use it. Just a few of the many excuses they have on their list.
Correct they are not acting in the best interests of any resident least of all the child or family in need.
The crux is the dire lack of suitable specialist supported housing for the many bedblockers causing the shortage of overnight respite beds. People are living in the already-insufficient premises because there’s nowhere else for them to go. Alongside massive central government funding for councils over the last 12 years, the axing of revenue funding for supported housing and the staffing crisis arising from Brexit and cost of living crises caused by the current government. Paid carers are paid too little and there aren’t enough of them. The councils rely on unpaid carers but there’s no recognition or support when it is needed.
Sort out the CAUSE of the problems rather than trying to treat the symptoms.
The council are in denial and are literally firefighting to maintain a skeletal service. Respite care is meant to PREVENT families going into crisis but it’s being used as a crisis management service when it’s too late.
I totally agree with all of your comments.
It is very sad to learn that resources have not been properly allocated to provide some sort of safety net to support this family (and possibly others) in the event of an emergency crisis. Peter Kyle is doing the humane thing – advocating for Meredith McGill and her family and trying to ensure that families with vulnerable children with complex needs, particularly those who find themselves in a crisis situation, get the support they need. I hope the Council will act immediately – humanely and responsibly – and that the city’s other MPs will fight for much needed support for all families facing similar situations in their constituencies.
It is very sad to learn that resources have not been properly allocated in order to provide some sort of safety net to support this family (and possibly others) in the event of an emergency crisis. Peter Kyle is doing the humane thing – advocating for Meredith McGill and her family and trying to ensure that families who have vulnerable children with complex needs, particularly those who find themselves in a crisis situation, get the support they need. I hope the Council will act immediately, humanely, responsibly and appropriately, and that the city’s other MPs will fight for much needed support for all families in their constituencies who are facing similar situations. There is no excuse for the Council not fully supporting this family in the way that actually works for the family, given their individual circumstances. The Council has a duty of care.
It’s appalling, what do the council expect us to do when a family hits crisis point like this?
Extratime is the only holiday club on offer for children with additional needs and there’s currently a 3 year waiting list for one day. And that’s not one day a week, it’s one day for the WHOLE SUMMER.
Families living with disability are second class citizens to the council, it seems
I’m afraid there are too many people claiming Universal Credit instead of working full time and paying tax. Something has to give as the money is not unlimited.
What’s really frustrating is that these services have been withdrawn without being communicated. And emergency/crisis respite DID exist as several local families have had their monthly respite sessions cancelled because the bedroom was taken by a child unexpectedly being there. This is far from ideal as the small monthly respite of a couple of nights’ of uninterrupted sleep can be what keeps a family above the plimsole line. Using the line that emergency beds can be made available because it will prevent those families from having respite is manipulative and incendiary within the community. Clearly the current resources don’t and haven’t meet the need for a long time. My understanding is that any significant change to service should be consulted – since there has been an ongoing Co-production agreement in place with PaCC for several years now. We were asked to support a consultation around short breaks recently. It didn’t cover emergency respite. It didn’t cover families currently blocked from accessing their right to a Carer’s Needs Assessment (a statutory right under the Care Act). There needs to be greater transparency and a full evaluation of the service, the shortfalls, the impact on families (as well as the long term financial impact on council’s budget of not providing adequate early support or crisis support). Too many families are at breaking point. In my own situation as a single parent with my own health needs, I have resorted to asking my teenage daughters to try to care for my son, just so I can get a break or have an extra couple of hours sleep, when my immune system burns out through stress. They are 14 and 16 and it’s a burden on them and it’s exploitative. But if Social Care don’t set wages to recognise skilled PAs, or encourage people to become carers, this is what happens. Children looking after children and families breaking. If we really want to live our values as a city, this has to change. And we can’t keep blaming central government as that is a conversation cul de sac that effectively shuts down any kind of improvement to this dire situation. The Council must do better.
I have been in this situation several times in Brighton. When I slipped a disc in my back and still had to care for my son.
Most recently when my son was left in hospital for nearly four weeks due to no emergency respite. I had had surgery on my back only 8 weeks before and was not allowed to lift.
In the end a family friend had to move in and help me so we could get my severely learning disabled autistic child out of hospital. He was very distressed by this point. Disability services couldn’t even come up with a plan to help and I was told over and over again no emergency funding.
My family was I’d crisis as are many families and none or little help is offered. It really is an awful mess which needs to be addressed as a priority.
Absolutely shocking to leave families like this. Respite is absolutely imperative. We are lucky to have got a place with the AMAZING Extratime before waitlists went crazy. But lots of families are not. Stop blind blaming the useless government we have – the council MUST readdress funding immediately and look at helping the Extratime to expand especially in the holidays.
Why why why why are families of disabled children OBSTRUCTED at every turn by this council. It’s hard enough!!
We need help with health, eduction and respite NOW! For such a forward thinking and bohemian city I am constantly shocked by the sheer and distinct levels of gas lighting towards parents not to mention the complete lack of support that families and the children themselves have to endure.
The lack of funding for any care services within Brighton & Hove is totally shocking but if you add on the complex care needed by so many families with young people with disabilities, it’s downright inhumane. The Council seem unable to admit that mistakes are being made and something needs to change, immediately. The McGill family need assistance right now and the Council need to figure out a way to make that happen. It can’t be a one size fits all approach, each crisis for each family is totally different and needs to be addressed in the most suitable way possible.
The total lack of support is crippling for so many families within the City and people need to start speaking out. Surely the cost of emergency respite is less than the cost of a family being torn apart by mental health crisis?