When trying to navigate the Irish health system on behalf of a child leads to utter despair

Muhammad Zain Shafqat collapsed at home in November, 2022, after his cutting out of meals and reducing drinks escalated to refusing to consume anything.

The teenager was brought by ambulance to CHI@Crumlin and admitted for treatment for his immediate medical needs.

Just over a year later, he is still an in-patient there.

The reasons for that are complex. Living with autism and a moderate learning difficulty, 16-year-old Zain is being treated for psychiatric illness. Yet, he is in a nephrology ward – where babies and children with kidney and stomach problems are treated – because there are no specialist psychiatric beds in what is an acute hospital.

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Efforts by medical staff in Crumlin to get an in-patient, paediatric psychiatric unit to allocate Zain a bed for further treatment ran into a stalemate of opposing clinical opinion. The focus now is on what supports Zain and his family would need to enable the boy to be discharged home and cared for in the community.

Last April, the family say they were told approval of funding for a nursing homecare package had been granted, but they were warned it would take time to get it in place.

Seven months on they are still waiting.

“We are on our knees now and do not know what to do,” Zain’s brother, Muhammad Hamza Shafqat, a second-year medical student at the Royal College of Surgeons in Ireland (RCSI), tells The Irish Times. In desperation, the family, who moved here from Pakistan 22 years ago, is talking publicly in the hope that it might highlight the systemic inertia they have encountered and speed up the provision of supports which Zain and they need.

They are the latest example of a family expressing utter despair in trying to navigate the health system on behalf of a child with a psychiatric illness and co-existing conditions. Their story echoes that of a Wexford couple, Audrey Dore-Geraghty and her husband Huw, who told RTÉ’s PrimeTime in October about how they are scared and pleading for multi-disciplinary help for their increasingly violent nine-year-old son, Harrison, who has autism, which is further complicated by several psychiatric disorders.

Families such as these know to their cost the “culture of silo mentality” that the Inspector of Mental Health Services highlighted in a report last July as a major barrier to integrated care in this area of children’s services. “Silos of service provision are one of the fundamental root causes for the lack of adequate and timely mental health services for children across all services,” notes the Independent Review of the provision of Child and Adolescent Mental Health Services in the State. It talks of “meaningless boundaries” adversely affecting patient care.

“Is it normal that we have to be this involved in the bureaucracy of it all?” asks Hamza at one stage, as he sits alongside his mother, Kishwar Shafqat, in the living room of their home in Lucan, Co Dublin, giving a synopsis of their efforts to advocate for Zain, going back many years. The account is from their perspective because health professionals cannot discuss individual cases with the media. Hamza and his father, Muhammad Shafqat, take turns to be with the troubled teenager 24/7, as they did long before his eating disorder precipitated his latest, lengthy hospitalisation.

“My Mum can’t be near him; he is quite wild, he is quite impulsive – he broke her front tooth the other day and it was quite painful,” says Hamza. His father left his job in the Embassy of Pakistan, where he was secretary to the ambassador, more than a decade ago to help his wife cope with Zain’s behaviour. They started to bring him to appointment after appointment to try to address his problems.

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The stress of Zain needing around-the-clock supervision has affected his father’s health and Hamza has helped out ever since he was old enough. But the strain of this and his constant chasing of services since he became more involved as an adult are disrupting his medical studies; after a day of practical training he sleeps on an armchair bed in Zain’s hospital room at night, to give his father a break. Since Zain was admitted to Crumlin, “he has broken everything in his room, the walls are all smashed”, says Hamza. What’s more, the family believes the rooms on either side of him have had to be put out of use, due to his bouts of loud and disruptive behaviour, and a security guard is needed to sit outside his door.

When Zain went in there as an emergency case a year ago, his condition was stabilised with intravenous fluids and, as he continued to refuse food, nutrition was attempted through a nasogastric tube but he kept pulling it out. Within weeks, it became necessary to start Percutaneous endoscopic gastrostomy (Peg) feeding – ie via a tube into the stomach, which enabled him to start regaining some of his drastic weight loss.

A liaison consultant psychiatrist in the hospital has diagnosed him with catatonia, a rare neuropsychiatric syndrome that, as Hamza says “targets his movements mostly and is related to his stiffness”. He says it was described to the family as when an animal feeling threatened has three possible responses: flight, fight or freeze – catatonia is an extreme example of the freeze option. That made sense to them because, in addition to his physical impulsivity, they were also used to seeing Zain sit or stand absolutely still for prolonged periods.

For example, he used to stand outside their front door for four hours without any movement, rooted to the spot, according to Hamza. “He would be stuck like that, no matter what the weather was. His hands and feet would go purple; we couldn’t even drag him in because when we did he would start shouting and screaming and crying and then he would go back.”

Before Zain’s admission to Crumlin, he had been attending the HSE’s Linn Dara Child and Adolescent Mental Health Services (Camhs) at the Cherry Orchard Hospital campus in Ballyfermot since early 2020. “We expressed our concern about him not eating and his symptoms of catatonia, which at the time we did not know of,” says Hamza. In hindsight, the family wonders if this development in Zain was a result of the trauma of having been involved in a car accident, and also cutting his hand badly on glass at home in 2019 for which he required surgery. Or if it was linked to him reaching puberty.

Although medications were being prescribed by Camhs, the family struggled to administer them. “If we mixed it in his food, he would stop eating it; if we mixed it in his juice, he would stop drinking it.” The only alternative offered was behavioural strategies. But the situation had got so difficult at home, the family were also seeking carer support and respite, as well as occupational therapy and psychology services for Zain.

Catatonia is “exceedingly unrecognised and undertreated” among the paediatric population, according to an evidence-based medical monograph published by the European Association of Psychosomatic Medicine in 2015. But it is “often associated with general medical illness, as well as autistic spectrum and developmental disorders”.

Treatment with high doses of lorazepam for the catatonia brought about only limited improvements and the clinical team in Crumlin sought a further evaluation with a US specialist. Hamza sat in on the remote consultation over a couple of hours, during which electroconvulsive therapy (ECT) was confirmed as the best option if medication was not effective. The family were agreeable, but “here in Ireland it is very difficult to receive”, says Hamza. While the possibility was investigated, it could not be pursued without agreement on admission to a psychiatric in-patient unit. The Mental Health Commission tells The Irish Times that its rules do not prohibit the use of ECT for under 18s, but it has not received any notifications of its use in that age category in recent years. The youngest person who received ECT in 2021, the latest year for which figures are available, was 23 years of age.

A hospital consultant psychiatrist had referred Zain for a bed in the Linn Dara Camhs inpatient centre to enable his treatment to progress. A Camhs clinical team visited the hospital to take his details, but the family says it heard nothing back. Hamza contacted the clinical directors of both CHI and Camhs to express frustration at the apparent impasse.

Meanwhile, Zain was “just sitting in the hospital room, getting sad and crying a lot”.

Hamza says “both [directors] clarified that they will engage with doctors and engage in communication with each other to create a plan for Zain”.

Indeed, another visit by a Camhs team to Zain in Crumlin followed immediately, but Hamza says he was not contacted in advance. If he had known, he would have been there instead of his father – who has limited English and there was no interpreter present. But, says Hamza, his father understood the Camhs team disagreed with the diagnosis of catatonia and the treatment prescribed.

“It was like a trust issue between the consultants, they were not agreeing with each other,” says Hamza. He has filed multiple online complaint forms through the HSE’s YourServiceYourSay, to which he says he got no more than automated replies, and he has also contacted the Ombudsman for Children’s Office (OCO).

The OCO wrote to Hamza in October, in a letter seen by The Irish Times, addressing his complaint that Linn Dara Camhs was refusing to accept a referral for Zain to their in-patient unit for treatment. Assistant investigator Eileen Gill explained that they had considered the information he had supplied and had decided not to investigate his complaint because the OCO had no role in challenging what was a clinical decision.

“Linn Dara appears to have taken reasonable steps to assess Muhammed [sic] Zain, including getting second opinions on their assessments. While Linn Dara has indicated that it is unusual for them to treat an individual with an intellectual disability, that does not appear to be the reason they are not accepting the referral, rather it is their professional, medical opinion that it would not [be] the appropriate course of action to treat Muhammed’s [sic] presentation.”

The letter said that the OCO understood Linn Dara Camhs continued to engage with Crumlin to support Zain going back home and being treated in the community. However, Gill acknowledged this “may not have been properly communicated to you and your family” and said the OCO would contact the patient advocacy service in Crumlin to ensure that the steps being taken to treat and support Zain were explained fully.

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The Linn Dara Camhs’ mental health intellectual disability (MHID) service was very familiar with the case long before Zain ended up in Crumlin. Between February 2020 and November 2022, 61 appointments were organised by Camhs, including school, home and clinic assessments, telecall appointments and interagency meetings, according to Kevin Brady, head of the mental health service in the HSE’s Dublin South, Kildare and West Wicklow Community Healthcare. He reported this in a letter, seen by The Irish Times, written in September to Fine Gael TD Emer Higgins who made representations on the family’s behalf.

The wheels of the multi-agency co-operation needed if Zain can be safely discharged home from hospital seem to move slowly. The Camhs MIHD service has been advocating for educational, disability, paediatric medical, GP and social care interventions, according to Brady’s letter, and last July initiated a “meitheal” process, designed to bring together the different agencies involved. Hamza says another of these meetings has been scheduled with the family to try to find a way forward.

Meanwhile, Zain is allowed out of the hospital when possible to spend a few hours at home before returning to Crumlin in the evening for Peg feeding overnight. Specialist nursing support would be needed for this to be done at home. His movement seems to be improving; it now may take only an hour for the family to get him through the front door and into the kitchen – after half an hour of standing still outside is repeated in the hall.

Over his time in Crumlin, Zain has stopped looking at devices or playing with toys. “There is a TV in his [hospital] room but he will not allow it to be turned on. He just sits there for very many hours.” Hamza says Zain is on an anti-depressant now, in addition to anti-psychotic medication and gradually reducing doses of the lorazepam.

Even when he is at home and the family shows him things he used to be interested in, such as swings in the back, he still won’t engage. “His room is upstairs but he stopped going to that room completely. He is in the kitchen on a mattress. He sits there for the majority of the day. He does not go to the bathroom anymore.” Zain allows his older brother to shower him, which he did not before.

“He has no sort of purpose at the moment for himself,” says Hamza. “He is just going to the hospital and coming back.”

While he was verbal some years ago, now they hear him speak only a few words a week.

His father brings Zain in to meet me and they sit on a sofa together for a few minutes as Hamza talks on behalf of all of them.

Fitting in has been difficult for Zain for most of his young life. It became evident in pre-school that he was different from other children. Diagnosed with autism and a moderate learning difficulty, he got a place in St John of God’s special school in Islandbridge. But slowly his time at school was reduced to one hour a day because the school said he needed more support than they could provide. A psychological assessment organised through the school noted symptoms of Attention Deficit Hyperactivity Disorder (ADHD), along with his other conditions, but the family says they were unaware until recently that, in some cases, this can be managed with medication.

Zain had become more violent towards other children and teachers. It was obvious, says Hamza, that could not continue. “He wasn’t receiving the kind of appropriate medical treatment that he needed.”

During the Covid lockdown, Zain’s anxiety worsened and the symptoms of what they now believe is catatonia developed. They tried to get him back to school when it reopened, but it just wasn’t possible.

Hamza says the family are very grateful for the continuing care in Crumlin and acknowledges how difficult it must be for hospital staff. But he believes Zain has missed out on getting “the ideal and best quality of treatment in a psychiatric ward” elsewhere.

Asked what the family wants now, Hamza replies: “We are asking what has been going on in the hospital, be done in the community here. What the doctors are doing now, it is not their job to be doing, it is the community’s job.”

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A spokeswoman for CHI says it cannot comment on individual cases. Talking generally about referrals from psychiatrists in children’s hospitals to Camhs in-patient units, an HSE statement to The Irish Times says cases are referred “for consideration and assessment by an in-patient Camhs unit”. These are “triaged immediately” by a senior clinician such as a consultant psychiatrist or nursing manager, and classed as “emergency”, “urgent” or “routine”. All referrals are reviewed by the in-patient multi-disciplinary team, which is led by the Camhs consultant psychiatrist.

“When deciding if a child or adolescent needs in-patient care, a number of factors are considered. These include consideration of their clinical presentation, their level of social and family support and the availability of resources and treatment options in the community. The final decision regarding admission rests with the Camhs in-patient consultant psychiatrist who assumes clinical responsibility for the child or adolescent once they have been admitted as defined by the Mental Health Act, 2001.

“Children and adolescents accepted for admission will, in general, have a severe and complex mental disorder, which requires the level of treatment provided in an in-patient setting, with clear evidence that: a) intensive treatment is required within an in-patient setting; b) there is a level of risk due to their mental disorder that is more appropriately managed in an in-patient setting”, it adds. In responding to some general queries not related to the specifics of Zain’s case, the HSE national clinical adviser for children and young people, Dr Ciara Martin, says it is unusual for a direct clash of clinical opinions to arise within paediatric medicine because of its very collaborative nature.

“Often a diagnosis and treatment isn’t immediately obvious when a child comes in. Paediatricians will liaise with GPs, community services, nurses and the families to try to find out what is going on and may well bring it to a multi-disciplinary team, who would come up together with the best plan of an approach for a child.”

She says difficulties arise where intellectual disabilities contribute to behavioural requirements. “That is where you need more community beds; more respite earlier to stop it escalating.”

It is an area she is working on with the clinical lead for youth mental health, a newly created position to which Dr Amanda Burke was appointed last July. “There is a group getting together, all the right people from community, disability and psychiatry and paediatrics, to look at those children on a case by case basis.” The aim is “to get faster decisions and really understand what is best for each patient.” If the best place for them isn’t an acute hospital or a psychiatric hospital, “there has to be a decision”.

She acknowledges how hard it is for the affected children and their families.

“When they come into a hospital, it’s generally a last resort. No family wants to sit in an emergency department unless they have to.”

Looking back, the Shafqat family feels let down by Camhs and community services. They believe if the needs of Zain and the family had been addressed much earlier, “it would have never gotten to this stage where we are now”.

“There is no end in sight,” adds Hamza wearily. “It is difficult to see what we can work towards.”