For over a decade, Weary Mother has been writing comments on this blog often about her son Neil. Neil is a character, an actor, a person who gives much that is unnoticed. He’s loved off the planet by his mother, Isobel. Isobel is a character, an ex-social care professional, a force of nature.
Neil is now 60. Isobel, 87. Isobel has spent decades supporting Neil. Until a year or so ago, she supported Neil’s wife Sharon. Working her socks off to keep them both well in the flat they lived in. Each one of Isobel’s comments on these pages is breaktakingly powerful and often devastating. This from December 2025:
On the 19th of December last year my daughter-in-law died. I sat with my Down son, he will be 60 next year, and was married to this tiny innocent little woman for 25 years. He was her devoted partner for 30. They met at school. A school for children with moderate learning disabilities. my son went there when he was four years old. She came later – for was 6 years younger. But age was not a prime factor in this lovely school.
We, my son and I and my son’s underpaid and undervalued support worker, sat with her all morning while she died. My son held her hand as she died, I held his, and his compassionate worker – who does the role and and the tasks of social worker, held mine. He made all the phone calls; did the hospital admin while my son and I sat with her until it was dark outside.
She died long and very painfully, far too young. She died of everything that is wrong with social work and so called Statutory Social Care.
She died of lack of accountability.
They loved every single anniversary for all were a shared celebration. Family birthdays were special time to shop and choose and post presents. Valentines day was always hugely special; where they chose and sent each other a card. My son came to live me for a while soon after she died and we were in a supermarket; his face melted when he saw the Valentine cards.
She loved ‘shiny’ things. The flat was very full of all little purchases that had brought her pleasure. We have cleared them all away and there is a bed settee where her bed was.
It is nearly Christmas again; I see similar shiny pleasures for her everywhere, and I can no longer buy them for her. My son feels same, but for him it is so very much worse.
We have had no support from the social worker who was allocated shortly before she died. I asked this worker first time we met, it was soon after the funeral – ‘why do you stay when the new young social workers all leave’? the reply was ‘ the grass is not greener else where’.
What an elegy.
Neil has been in hospital for weeks now with serious health issues that should never have progressed to the extent they did. As Isobel, who has been by his side, says, “the combination of GP negligence, and a brutal Shires Local Authority that reduced all learning disability support and contracts learning disability support from a revolving door of cheapest unskilled care workers, harmed Neil”.
Neil is now in a situation of being discharged from hospital with a catheter and no social care support at home. The hospital social worker is in hiding and the community social workers don’t get involved until the person is home. Isobel says “I have two choices leave him in hospital to deteriorate further or hand him over to the agency that has harmed him. Same kind of agency that slowly killed Sharon”. She is certain Neil will develop sepsis like Sharon, and die. She ended her latest email to me with the words “I am very tired”.
I would like to know from any social care professionals how we could be getting this stuff so badly wrong that a parent who is nearly 90 is boiling bedsheets and scouring a flat for her son to come home to. Ready for her to care for him.
Please feel free to comment below as Weary Mother has been doing for years.
Thank you.
I am tearful reading this. Not surprised though at the absolute dereliction of duty. Vileness in the face of innocence, beauty of love. Condemned. Its f***ing outrageous.
Just filled with fear regarding my own dear boy. Adam, 36 and things get worse and worse.
Heartbreaking. Rage inducing. Love to Isobel.
So so sad to read. My observation may be well be unpopular with some folk and I understand that but nonetheless….what Keir Starmer loved calling ‘the State’ does not value human life. The strategy of him and his colleagues, and many others of influence in the culture has been to promote assisted suicide…that the weak and fragile should be encouraged to die. Now whilst the horrific ‘Leadbetter’ bill ( ironic name that!!) has fallen it did expose this for all to see. I say for all to see..not all wish to see it because it exposes the belief in our Post Christian society that the ‘weaker’ should be helped to die, that the less than ‘perfect’ have less value than others…and that it’s the States job to enable this to happen. So whilst one Bill has fallen the cultural shifts it spoke of continue to shape the thinking of people generally and ‘State’ agencies. It will be for people to step in offer actual care and support.The post war generation began a trend with the NHS to contract out caring to the State. Maybe it started well…but now we are reaping fruit long in the growing. I feel challenged to step up.
Beyond cruel…and also deliberate.
Much love to Isobel and Neil.
A parent, carer and advocate for 35+ years here. Little changes are hard to find over those years apart from our ability to support with direct payments rather than leave to poor quality lowest price commissioning.
I have conclude that in our UK society being a contributor to the economy is all that matters
Neil is home from hospital.
Neil, almost catatonic with exhaustion, came home into his flat followed by care staff from previous care agency insisting on a new assessment of his needs;
Brain numbing questions in the blindingly hot flat on the location of the stop cock and the electric meter – and would he sign a DNR.
I woke up..
and I provided a crisp reply to the negative.
Massive Nationwide domiciliary agencies set up to provide domiciliary support to people with needs of later old age, are ‘applying’ the DNA question, from a tick sheet – to LD people
I explained, with emphasis, where and why I believe it is wrong.
I was present years ago when Sharon was asked this question by a ‘similar’ agency. Sharon had no clue what DNR meant, and the questioner explained ‘ it is electric shocks’. Sharon said ‘dont want electric shock’ and she got a tick for yes.
I took it off.
During Covid I rang 999 for Sharon. Same night I refused four bullish demands from a consultant to agree a DNR for her.
Had I not been present on the previous occasion no permission was needed…..
This needs sorting.
In tears. Beyond appalling. Neil should be getting Continuing Health Care support.
Social Care will do a maximum of four visits per 24 hours and they don’t do clinical procedures like catheter care.
My very best love to Isobel and Neil. Kara xx
Thank youx
I am continuing in this thread for it is so important; so many others are struggling against the same.
Neil, is joyfully peeing normally but the tubing from the umbilical tubing is still attached to his belly; is strapped and dangles around his thigh. He has a covered wound that though checked every two days by district nurse is very vulnerable to infection. His wife had same checks and infection after infection in her renal fistulas until she died from same.
The same agency as before is providing Neil’s support and the only experienced carer is away next week; they have none other. Neil went into hospital (avoidably) only 15 percent of his original kidney function. This has increased slightly but depends on him drinking 4 litres of water daily. The days are long for him and he will forget unless reminded. And I cannot depend on the domiciliary carers to do this.
His Day Centre closed in June. Neil and I and others fought it hard – and we lost. He will go to another a distance away but transport takes four weeks to arrange post discharge from hospital. All social care is withdrawn on entering hospital; not reinstated till home. He is now facing two and a half days a week with only brief personal care call, till this transport sorted.
Domiciliary Agencies are cheapest for LA; and not setup to support LD people generally far less Neil and Sharon who chose to marry and live independently. All the obvious risks in this were present in every day of their married life.
I read of so many families saying same – if they want better and safer support they must find it themselves and then they must administrate all. LA no longer hire brokers to manage direct payments. If Neil is to have If better safer support – I have to find it. I have to manage the finances and I have to monitor same. LA’s have out sourced their Statutory Duties to deficient agencies and exhausted families.
We go to hospital today to see what next re catheter or no catheter. Neil has had a good week at workshops with his theatre group. And he is hopeful.
The aggregated dangers are huge. Pastoral or needs led social work is rarer by the day. Recent years saw two young social workers leave within months of arrival. The immediately previous and recent since hospital discharge work by the organisations’ book.
Things can only get increasingly worse unless this Government makes a stand; hands back all Statutory Duties and Responsibilities to Local Authorities with very strong penalties for failure attached – to the Leaders.
I am told by domiciliary agencies ‘our staff are not nurses’.
LA’s are aware of the deficiencies in commissioning basic care agencies.
My Down son now has an infection in his umbilical wound. The fears that resolved me to keep him in hospital for so very long – are now fact.
Early on his discharge home district nurse support was withdrawn. It appears that as as soon as any patient is home and ambulant, after three visits this service is withdrawn. I firmly explained the dangers in this to all involved, including to the local County Council members The agency carers all say ‘ they all (clients – wounds) get infected’ – as though this is something to be expected.
District nurse was re- instated and this nurse saw the infection.
District nurse support and antibiotics is now ongoing.
Had I not challenged the withdrawal of this district nurse Service the infection would still be there and still be untreated.
When a ‘one way fits all’ approach is applied; where learning disability plays a lesser part in LA commissioning and or same in NHS Primary Care diagnosis and support – this, in combination, will continue to be pretty deadly.
.
In my experience (I have a young daughter with special needs) everything is locked behind layers of bureaucracy. And the way the NHS / Social Care tries to deal with this is by hiring more bureaucrats. It’s a self perpetuating system.
And the really good people, like the support worker in this story, are almost always underpaid and under appreciated by the organisation. It’s crushing.