Emma Golledge, aged 3
Late in November last year Emma Golledge, aged 30, received a letter from the Department for Work & Pensions, the section of the British government that deals with welfare benefits. She opened the brown envelope and read that if she didn’t respond within a few days “any existing entitlement may be disallowed”. The letter was signed “Office Manager”. Emma reacted physically: the blood to her brain slowed, her speech slurred, all feeling in her right arm drained away. She was having a mini-stroke.
Why did a letter from the DWP cause such a reaction?
Fast-forward several months to February 2016. Emma’s mother Penny is awake at 4am one cold morning. She switches on her computer and begins to write me an email:
“Before Emma’s stroke she was a very tenacious girl, full of ambition and life. I thought you would like to see Emma’s qualifications.” Penny made a list:
Travel and Tourism AVCE
2 A levels Advanced Diploma Animal Management
Advanced Certificate in Applied Biology
Madagascar BTEC in Conservation Management
Shamwari game reserve
Several Nutrition Courses + 6-7 years working in the Pet Shop industry
Southampton Uni 2005-2008
7 months working as a Vet Night Nurse
Penny went on: “Emma was about to embark on a PhD in conservation + Biodiversity and get her own place with animals, and a dog.”
Across several pages Penny makes the case for her daughter’s life. She cannot understand why the DWP, the council and their local NHS commissioning group are blind to the fragility of Emma’s health. “If Emma continues to live beyond expectations …” she writes. And this is the crux of the problem. Emma survived.
A happy family
Penny gave birth to Emma when she was 23 in 1985. Her son Mark was born two years later. Before the children came along she’d worked as a secretary and then, after Emma was born, as a carer at an elderly people’s home. Penny was an artist too, but hadn’t yet made a go of making it a career. Her husband Richard worked first as a farmer, then got a job in Agricultural Chemicals. The family managed financially. They couldn’t afford a car and Penny would cycle her delighted children about on a Pashley Tricycle. Emma was a lively child with a mop of thick brown curls. She loved horses.
Then, when Emma was 4 years old she seemed pale, lost her usual energy. One day her lips turned white and her stomach became slightly distended. Penny remembers the night the doctors confirmed that their little girl had acute lymphoblastic leukaemia. “Part of me died.”
Penny watched with dread as Emma, kept in a small sterilised room in the hospital, was wired up to machines and tubes, injected over and over, her tiny body racked with pain.
A speck of dust might kill her. Emma ate from plastic disposable tableware. Before every hug or kiss Penny would wash her hands. The first chemo session left Emma shaking violently. Penny noted in her diary:
“She cried out that she was cold, so I wrapped her up in a blanket, but she continued to shake and after a few seconds I realised this was not the cold. I jumped on the bed beside her and held her close, was she dying?”
Day of diagnosis, Southampton Hospital (aged 4)
For two years Emma hovered between life and death. She had intense radiotherapy. Her hair fell out twice. Penny’s inability to protect her child grieved her. She hated consenting to treatment she knew would hurt. Unable to leave Emma’s side, Penny missed much of Mark’s early years, another loss.
For a brief spell Emma was well. Then, in September 1991, when Emma was six, the cancer came back.
Mark, then aged 4, donated his bone marrow and saved his big sister’s life. There was a cost: Emma endured whole body radiation, including treatment to her brain. She was sick all the time.
The doctors didn’t expect her to survive more than a few years after the transplant. Penny learned to administer Emma’s drugs and became a full time carer. “We felt we were living on a knife’s edge, borrowed time,” says Penny. “We ate at the hospital, trying to create ‘happy times’ for the kids and continuity of care, all on a shoe string.”
New Milton Advertiser, 1992
Emma lived to age 7, then 8, and eventually she went back to school. There were still intrusive treatments and age 11 Emma was told that she was infertile and that her IQ might be affected by all the chemo she’d had.
Still, she thrived in school, then at college and university. She travelled the world, worked with big cats in Madagascar, swam with dolphins and sharks, spent time on a conservation park in South Africa, jumped from a plane at 10,000 feet, became a veterinary nurse.
Tentatively, the family began to relax. Henry was born in 1997 and they moved house — it helped financially: Penny made miniscule amounts on her art, here and there, and they had huge loans to repay.
Emma, Mark and younger brother Henry. Milford-on-Sea, 1999
Late in 2009 Penny was diagnosed with breast cancer. There were extra costs, reconstructive surgery, wigs and treatments for infections. Richard took months off work to care for Penny and Henry. Their mortgage repayments, credit card bills and loan payments stacked up.
Besides the emotional turmoil of her mum’s cancer, Emma seemed fine. They were a close family, always joking and teasing one another.
By the time Emma reached her early twenties she knew she would spend her life working with animals in some way and was looking at getting her own place. And she had nearly come to terms with the dark memories of doctors and hospitals from her childhood.
One day in early December 2011, Emma was sitting at her desk — looking for pet rabbits online. Without warning she blacked out, fell forward and smashed her head on the desk, knocking out her two front teeth. Blood covered her mouth. Her breath came in laboured gasps. She had suffered a subarachnoid haemorrhage or a stroke. Doctors removed a three-inch blood clot from her brain. She was 26.
For 14 days at Southampton General hospital Emma lay in a coma. On the day she came-to, the doctors told her family that she would be moved to another hospital, and treated on an elderly stroke ward.
Emma in a coma. Southampton, 2011
The stroke had disabled Emma; she couldn’t walk, talk, eat or do anything for herself. Her left side was paralysed. Her body was already weakened from the intense chemo she’d gone through in childhood. There were all sorts of problems aside from the stroke: type 1 diabetes, cataracts, cognitive issues. After the operation she contracted pneumonia. Her eardrum was perforated.
Penny and Richard wanted Emma to stay at Southampton General – it was where she’d been treated as a child and a centre of excellence for neurosurgery. Why should Emma leave?
Penny suspects now that it was to do with cost; the hospital didn’t want to pay for what would be expensive treatment for Emma and so they were sending her elsewhere. Penny began to read up on the new clinical commissioning groups, part of the reorganisation of the NHS started by the Coalition Government in 2010. “This brought me to conclude that patient health decisions were being made by the CCGs and not the doctors,” she said.
Penny and Richard heard about a specialist rehab centre for brain injured patients in Salisbury. It was privately run and more expensive, but offered physio and sports-related facilities that might aid Emma’s recovery. It was a place with a lot of young patients who’d been badly injured in some way, but were still expected to recover and live long, physically active lives. And the Primary Care Trust sometimes recommended other patients be sent there. Penny and Richard asked if Emma might be sent there.
Now the hospital said that Emma was too ill to be moved.
When Penny and Richard met the referral team and suggested the Salisbury rehab unit, they were told that Emma didn’t meet the “clinical need”.
Throughout this period — a couple of months — Emma was held on the adult neurology ward, full of acute cases, elderly patients confined to their beds. Penny felt that Emma wasn’t getting the care and rehab she needed to get up and moving again.
Penny says: “After the stroke, Emma became very childlike. She held me, with the only strength she had in her right hand. She held onto my hand and I knew that there was no way she would want me to leave her. She was clinging to me.”
Emma was miserable. She’d started to talk again and the feeling was returning to her left side, but she wasn’t getting much physio at hospital. In January, her mum decided to take her home and care for her there. She lasted a week. Emma needed round the clock care: washing, dressing, getting up and down stairs, bathing, using the toilet.
Eventually the family went to the press hoping to “shame the PCT for lack of care”. Instead, an anonymous benefactor gave money, enabling Emma to go to the private clinic in Salisbury.
Emma stayed until March 2012. Still, it was tough. Emma’s experiences had shaken her trust in health care specialists. She just wanted to go home. She cried a lot. Shortly afterwards, she wrote: “It has taken me years to come to terms with my childhood experiences. I have to deal with the nightmares and confront doctors and nurses all over again.”
In the months following her release from hospital Emma focused on regaining the use of her broken body, while battling depression. What helped was support from her family, horse riding which cost £20 for a half an hour lesson at the weekends. This and assisted swimming lessons helped strengthen her core muscles, though her left arm was still limp. Her body was slowly healing.
Then in May she discovered a lump on the side of her head. It was painful, but worse was the idea of spending time in hospital or going for a check-up. So she left it. And it grew.
Penny insisted that Emma get the lump checked out. Doctors said it was a screw left over from the operation and they’d need to operate to on her head again. Emma was crushed. “At this point she’d had enough and just wanted to be left alone, she didn’t trust anyone and her resolve left her,” says Penny. She refused treatment and didn’t believe the surgeon’s diagnosis. They went home.
Emma took to her bed for long periods and sank deeper into despair, the previous months of progress on hold. She wrote a will and requested that her parents be given power of attorney should anything happen to her. By August Emma’s face was swollen and purple. The screw had caused an infection that had spread across her face. Penny took charge and Emma was taken to hospital. Because she was still so fearful of being back in hospital Emma asked to be kept awake, while under local anaesthetic, during the operation to remove the screw.
Marwell Zoo, Winchester, 2008
The safety net
By 2013 Penny and Richard were running out of money. They had funded much of Emma’s care to that point including a £2,000 for a stair lift and £300 for a bath seat. The Primary Care Trust refused to contribute because Emma had been discharged from hospital after her stroke and been treated at the rehab unit in Salisbury. This meant she was a private patient.
Penny had applied for Disability Living Allowance while Emma was in her coma at the start of 2012 and that had been processed by the time she was back home. Emma was also entitled to a care plan funded by adult services.
So why were her parents broke? Emma got the elderly care package (she’s 26 at this stage), which covered 14 hours a week for a carer. There was no money left to cover the things Emma felt would actually get her better, like physio and therapy. So mum and dad paid for these until they couldn’t. A year after her stroke and the operation on her head, Emma was starting to recover.
Around this time, towards the end of 2012 and at the start of 2013 Penny began her campaign to secure a better care plan for her daughter. Penny wrote letters, met with the head of the Clinical Commissioning Group, and got a solicitor to challenge the local authority’s decision not to give Emma a more comprehensive care plan.
Each organisation said they couldn’t help, their “hands were tied”. Social services didn’t have the budget and passed her on to health. But health said that Emma wasn’t eligible. There were meetings to decide action plans and assessments. The family was stuck in the bureaucratic fog of the poorly funded NHS and dwindling social care budget.
Spending on long-term social care by local authorities fell by 7% between 2010–11 and 2014–15 to £6.3 billion. The Care Act 2014 was partly supposed to give people with care needs or disabilities a greater say in their care package and control over their budgets. Despite this, Emma’s case seemed too personal for services, she didn’t tick the right boxes and services were at a loss.
Mike Marqusee, the late journalist and political activist, wrote in his book on the politics of the NHS: “Even in the best hospitals, the loss of freedom and the dependence on anonymous forces can be oppressive. Many cancer patients find themselves involved in a long and taxing struggle for autonomy — a rarely acknowledged reality of the war on cancer, in which the generals call shots from afar.” Emma would sit in the meetings and cry.
In the Summer of 2013 Richard was diagnosed with oesophageal cancer. Within six months he was dead. Penny remembers his nails turning black and the final horror of his death-bed, the tubes, the blood. “Richard’s death was sudden, extremely clinical, frightening and unexpected.” She was alone.
It was now two years since Emma’s stroke and her physical health had improved, but her mental health suffered. She had panic attacks and found social situations difficult. Uncertainty settled over the family.
Penny told me: “From Emma’s point of view, I am her only safety net. She has no housing of her own, she lives under my roof, I am here for her 24/7. If something happened, to me what would happen to Emma?”
By now Penny couldn’t trust the NHS. “Her health and care has been compromised and jeopardised through incompetence. Despite all the evidence I presented and constantly bombarded them with over four years, they ignored this crucial element to her care. I know I have been labelled a neurotic mother and Emma has been conveniently parked by the CCG and those holding the purse strings. It’s because they don’t want to pay for such complex care.”
All the care Emma had received up to that point had been what would have been afforded to an elderly stroke victim. Most of their battles had been about getting the NHS and local authority to treat Emma as a young person who’d had a stroke and survived childhood cancer. They’d failed.
“It’s taken me a while to understand what’s gone wrong,” says Penny. “You tend to think of the National Health Service, it’s all going to fold into place and this service is going to take care of me. It is amazing to realise that it is actually falling apart at the seams.”
A letter from ‘Office Manager’
In the months leading up to Emma receiving that letter from the Department for Work & Pensions, her mother had been in contact with them and with her local MP. Emma was in the last batch of Disability Living Allowance recipients who would need to be reassessed in order to receive the replacement benefit, the Personal Independence Payment, or PIP.
Given Emma’s history, Penny wanted to ensure the transition went as smoothly as possible, with little intrusion. Two doctors wrote to the DWP explaining that Emma was not fit to undergo an assessment, and that Penny was her power of attorney and so all correspondence should be sent to her. Moira Swayne, wife and assistant of Penny’s MP, managed to get a stay of execution for 15 days. She contacted them twice on 16 and 23 November. The letter addressed to Emma arrived on 25 November. It was short and impersonal, but enough to distress Emma.
Since her first stroke in 2011 Emma’s recovery was patchy, interrupted by her father’s death and the difficulties in getting a decent care plan. She was vulnerable and needed care. And yet, just five years ago she had been an independent, young woman discovering that she had a vocation and after a difficult childhood was keen to start afresh. Emma wanted this independence back and didn’t want to rely on her mother indefinitely. That’s why she was so keen for a care package to include not just basic care — someone to bathe her, clothe her — but physical activities that would help heal her body so she could be independent again. The letter from DWP threatened to take away some of the income that she had, delaying her recovery even further.
Emma completes charity tandem skydive over Salisbury, June 2010
Emma suffered a transient ischemic attack, or a mini stroke, and was taken to hospital. It was less severe than the first stroke, and while her speech and feeling in her right arm and leg were affected, she was able to return home the same day. In the days that followed another letter arrived, this from adult services requesting that she be assessed for her care package. Penny was frantic, what if Emma read it and got herself into a state again? Her mind buzzed and she began to wonder about the radiotherapy treatment Emma had had as a child, what had it done to her? Should they have refused it? Would Emma have been taken away? She couldn’t find an answer to what was happening to her daughter.
Penny contacted her MP again and asked for help in getting through to the DWP to ask them to stop sending letters to Emma. She wrote to Jeremy Hunt and made an official complaint to the DWP.
On 29 December the DWP sent Emma a text message. It read: Thanks for sending us your ‘how your disability affects you’ form. We may need you to attend a consultation with a health professional before we make out decision. We’ll contact you again if we do. Please call us if any of the details you gave us have changed.
Over Christmas it seems Emma’s case was sent to ATOS healthcare, part of a French multinational services company which gained notoriety for its poor handling of work capability assessments.
Atos sent Emma a letter in January requesting evidence from one or more persons involved with her care and that she might be required to come in for a “consultation” with a “qualified health professional”. On the face of it plain, simple process-speak. The language of government buildings and customer service. But for Emma, who had spent the last four years of her life recovering from her encounter with health professionals who repeatedly assessed her, yet still didn’t help her, the letter was terrifying.
All Penny could think about was the stories she’d read about Atos and the DWP’s record with disabled claimants. There was Larry Newman, who had a degenerative lung condition and was declared fit to work by Atos. He died within three months of that decision. And Amy Jones, a young woman told by Atos that her cerebral palsy would improve, so she would need to be reassessed every six months to receive support. Between December 2011 and February 2014 2,380 people died after being declared fit to work by the DWP. Penny had seen Emma close to death more than once, lost her husband, come close to death herself and expected her daughter to die soon: it wouldn’t take much, why couldn’t anyone empathise?
Penny’s biggest worry was that Emma would be declared fit to work and lose all her entitlements in one go. “It’s daunting,” she says.
The whole process has taken a toll on Penny’s own health. She is suffering exhaustion and close to burn out, she says. But she continues to fight because no one else will. “Emma has multiple conditions; she is unable to fight for herself. If I hadn’t looked after Emma’s interests, she would have been bullied into submission and her mental and physical wellbeing would have been jeopardised more than it has been already."
There are likely thousands of Emmas without such support, and in telling Emma’s story we can have only a glimpse of the difficulties they face.
On 13 January the DWP responded to Penny’s complaint and said that after seeing the evidence from Emma’s doctor they agreed that she did not need to attend an interview in person.
Shortly after I contacted the DWP for comment about Emma’s case, she was awarded an enhanced rate of Personal Independence Payment with some support for her mobility problems. No further assessment was required.
But Emma’s care package is still uncertain. A National Audit Report published in February found that across the country local authorities are struggling to manage complex personalised care packages, incorporate savings and provide quality social care. Meanwhile, according to the Local Government Association, the extra promised to councils for social care in the last spending review won’t cover rising demand.
I asked West Hampshire CCG why Emma wasn’t able to choose her post-stroke care and what criteria the commission used to make such decisions. I asked for their policy on long term cancer survivors and on providing support to young stroke victims.
A spokesperson replied: “We cannot comment on individual patients due to our commitment to patient confidentiality. However, whenever someone experiences problems with one of the services we commission, we recommend that they contact our Patient Experience team, who can investigate complaints, comments and concerns from our patients, and we will commit to investigating the circumstances and responding as quickly as possible.”