Parents of children with disabilities see much more of the NHS than most people do, particularly if our children have associated medical conditions. We see it from lots of different angles too – frequent hospital in-patient care, repeated GP visits, peripatetic therapists visiting our children at home, or seeing them at school. We are often linked in with community teams, we are likely to spend countless hours in hospital clinic waiting rooms, and sometimes there can be more than 20 named NHS staff members responsible for our child’s care.

My son Toby was a particularly frequent-flyer, linked in as he was to countless different specialists. He was under 14 different Specialist Paediatric Consultants alone, as well as a Dietician, a Speech and Language Therapist, a Physiotherapist, an Occupational Therapist, a Behavioural Psychologist, a Paediatric Community Nursing Team as well as an Orthotist. I’ve almost certainly forgotten some of them, but even so, that’s 21 people we had to see regularly.

Add in all the emergency hospital admissions, some lasting six months or more, that we had to cope with during his childhood, and there isn’t much of the NHS that I haven’t seen.

However, parents in my situation find it very difficult to feedback their experiences of the NHS, for two main reasons. Firstly, we get to know our NHS specialists very well indeed and we rely on them to keep our children alive. Many of us would be very reluctant to be seen to criticise, no matter how constructively that criticism was intended.  There is too much at stake to risk jeopardising our precious relationships with these good people.

Secondly, parents in our situation are over-stretched already, just by having to attend so many appointments and deal with the deluge of paperwork that many of these appointments create. Our children’s conditions often mean that we are supporting them around the clock as well. We’re doing things like turning our children in bed every two hours throughout the night, or changing our teenager’s nappies, or sitting up all night with them while they’re poorly and at risk of choking on their own vomit, or washing and sterilising the dozens of syringes and plastic tubing needed  for their next gastrostomy feed and all the medications that will need to be drawn up. So we generally don’t have any spare time to tell the NHS what we really think about how they’re doing.

So when NHS Citizen launched their Gather Campaign, I knew that the voice of the Special Needs Parent had to be heard, but I also knew that it was unlikely that many individual parents would be willing and able to take part directly.  So over the past few weeks I’ve spoken to hundreds of parents, both in person and online, and here are some of the main points that parents in our situation collectively feel are ones that need highlighting. I haven’t included parents thoughts on CAMHS or Mental Health issues here – there were just too many comments to do them all justice in this post and I’d still have been writing it at Christmas.

We’d love you to know that we think most of you are fab, and we love working with you.

“Personally I’ve only had good experiences of NHS support over the 16yrs I’ve lived in the UK!”

 “Our GP’s are amazing. We always get appointments for us and the children.They know the stress we’re under, what issues we’ve been through. No judgement given, always support.”

 “Inpatient stays have always been fabulous at our local hospital. They made certain she is operated on first as she can’t cope with waiting. They had games lined up for her. They knew what her issues were before we set foot in the door and what’s more whenever we go back, they remember.”

 “All in all our NHS is beyond amazing. We are incredibly lucky that we have in general such caring staff.”

 “Our new GP is fab – can’t do enough for both of our children. He organised Physio, OT, speech and language, and education psychologist”

 
“Epilepsy nurse was magnificent organised training for everyone involved when they changed his emergency meds”


“Neurologist and paediatricians are amazing. Appointments are made in the am to suit our son, they have nurses who understand him and we only see certain ones and the appointment is made when they are on duty.”


“A & E know him when we are blue lighted we are also red routed so very little info given over the phone, he is taken straight into cubicles and seen quickly, then moved to children’s A & E section until ward calls down. We wait less then 45 mins from arrival to ward.”

“They really helped with our application to get him into the right school for his special educational needs, then they helped make sure we had all the correct people in place. Without the support from his doctors we wouldn’t be in the fab place we are”

 “GPs are very good – they understand my son and know when I say I think I need antibiotics or when there is no point in bringing him in to be examined and they trust me enough to take my word for it”

 “When I moved our new Health Visitor one was excellent – very supportive of the whole family and of me and acted as a great liaison point”

 “GP Fab – we always get appointments, always get their undivided attention, caring and compassionate”

“NICU, Audiology, Opthamology – all excellent”

 “Paramedics – my absolute heros and heroines”

 “A&E – good, Children’s Assessment Unit – freaking awesome but under resourced for complex kids, Specialist HV – my rock who holds it all together”

 “GP is excellent, health visitors are excellent”

 “Community team are fab. Nurses generally brilliant”

 “GP is brilliant… can usually get an app same day. We have a fantastic Health Visitor. All the consultants our daughter sees at our hospital have been great and her paediatrician is available to phone if i have any concern. NHS has provided all the equipment she needs so we have nothing but praise for the NHS.”

 “We did have a good HV. She helped get many an appointment sorted for us”

 “The Children’s Assessment Unit is really important for my sanity as well as her wellbeing, we know we can ring them if we have concerns and they can access her records and I can speak to a paediatrician if needed.”

“OT and Physio have always been good. I think that as practical practitioners, they understand the frustrations and impacts on daily life.”

 But sometimes we meet people in the NHS who let the rest of you down

“Health visitors are a waste of space. I shall leave that there. Apart from pointing out that not long after disabled daughter was born, the HV thought we were neglecting her as our house was too clean. We’d just renovated it. She was a few weeks old. She slept (those were the days). I was a professional person used to working long hours, not sleeping and I actually dared to wear makeup. She told us that she was considering a referral to social services because my house is too clean. If only she could see it now!!”

“The big hospital where our daughter was born wasn’t great. No information about her condition. No support. Medical immediate problems treated just not the future and emotional support.”

“CAMHS are useless, judgmental and don’t listen.” 

“Health visitor was waste of space.”

 “I prefer our child to go to our local hospital not the big one because it’s completely different there, we have had to  wait over 3 houses for triage”

“Camhs  are useless if your child isn’t self-harming they sign post you elsewhere.”

“Our Health Visitor was not good in the early years before we moved. She didn’t understand the complicated issues and was very patronising even telling me she didn’t think he was autistic because i could hoover and he was fine with that (he has a rare syndrome and severe autism). She wanted to come to visit when it suited her, not me, just to tick the boxes and with all the hospital admissions and appointments in the early days it was just one too many people to have to try to fit in but with no value for my son.”

 Hospital appointments:   some consultants are better than others. No apologies when they are running late – doesn’t take much especially with a child who can’t wait for long.

 “Our Health Visitor was worse than useless. She told me to night wean my failure to thrive baby with water at night when she was 17 weeks old.”

“The Community paediatrician was cold and disinterested”

 “GP pointless as always refers direct to the hospital.”

 “Consultants b$#@!y useless. They don’t know how to treat our children’s rare condition as it’s very unusual, but they can’t possibly listen to the parents”

 “Unless you ring at 8am, you can’t get to see a GP. You can have a phone consultation though. Not useful when the other person isn’t listening and just writes a prescription without understanding the actual problem.”

 “Maternity – awful awful AWFUL”

 

We’d love you to listen, every single time, and to properly hear our concerns, and to take them seriously

“I had one paediatrician ask me (after seeing her about 5 times) if my son can eat finger food. He’s got complex disabilities and is only tolerating small amounts of pureed food, which is in his notes. It was if I’d just met her that minute.”

 “My daughter asks constantly ‘why don’t they listen’ ”

 “Some of them think that they are always right, can’t see others point of view and should we deign to challenge them, then they label us awkward”

 “They spend 5 minutes in a room with you and your child and then write a black and white report and distribute it to all involved…if you dispute what they have put its tough because it never goes away. And they all stick together and believe each other over whatever the parents have to say. Parents who live with children day in day out know them well and want what’s best for them

“Those of us who love and live with patients, particularly those who cannot speak out for themselves, know far more about that person and their condition. It’s such a shame as real conversation would be so much more productive.”

“We are mum, nurse on call 24/7 I would love to see one of them spend 24 hours or even a week in our shoes and then they can have an opinion. The thing is, we’ve not learnt from books. We’ve learnt from life, our life and our children’s life. We have been self-taught by our children not by university or books or lectures. If only they took time to really listen, and really take on board our concerns for our children instead of checking their books as they do, and most children don’t really fit in with what they have learnt anyhow. It feels as if they sit there and judge purely because they have degrees and loads of letters after their names, meaning they must know more than us, right? Ummm no.”

 

We wish you could understand how frustrating things can be when nothing quite works as well as it should

“Neurologist – good but too few investigations and no chance of referral to get a better understanding of which symptoms are caused by the Epilepsy or the Cerebral Palsy”

“Community Physio – overworked”

 “Community OT – MASSIVELY under resourced and now no sensory support”

“Community SaLT – mixed but massively over-stretched and no chance to explore/work on the more worrying cognitive issues”

 “Paediatric ward – Doctors superb, nurses abrupt at times and massively overworked, meds late, I did all my daughter’s care and could never ever have left her.”

 “Our community midwife very good but hamstrung at every opportunity by the hospital midwives.”

 “111 or the Out of Hours Service take one look at her medical history and freak out!”

 “Our local hospital is, I feel, a bit out of their depth when it comes to our child. The nurses are very nice but they look to us for advice & there are only a small number of doctors we trust. We don’t condemn the medical staff & we understand that treating our child can be a bit frightening due to the condition being so rare but they are very vague & we feel they make no attempt to look at the “normal” symptoms”

 “When staff are good, they are very very good and when they are bad they are awful. We’ve had a few that have gone above and beyond and a few that have deliberately set diagnosis back by their God complex, which has cost the NHS time, money and many frustrations.”

Then sometimes things just go wrong for us, either because services don’t join up, or because we, the parents, are not in agreement with what you think is right for our child. Sometimes things just go horribly pear-shaped, and no-one seems to have the know-how to put them right. Here are a few examples.

“My biggest frustration is the layers of bureaucracy created by the NHS itself. An example for us was trying to get a referral for the dietician. Our General paediatrician, our gastro Paed consult ,our GP, our Heath Visitor and our ENT paed consult all tried to get a referral for my child, but they were all refused an appointment as we ‘did not meet criteria’. Our Speech and Language Therapist happened to work in the next room to the Dietician we were unable to see. So I walked in and asked what the actual criteria were. I then filled out a form and we got our appointment.”

“In our area, children with dyspraxia do not get Occupational Therapy input, but, if you have a ‘medical condition’ that needs OT input, you can have an appointment and discuss the dyspraxia! So it could work that you could have a child with autism, dyspraxia, ADHD, SPD and not get an appointment, but have a child who is having problems with their hip – who happens to have dyspraxia, get an appointment and spend the whole session discussing the dyspraxia and getting school visit, support etc. It’s the unfairness and the inequalities that are so frustrating.”

 “My son needed a blood-test. As a child he always had to have a mild sedative beforehand, and the blood-tests went well. As soon as he became an adult the hospital wrote to my GP to state that sedatives could only be prescribed for blood-tests once we had explored all other avenues first. I asked them to read his notes to see that all avenues had already been explored, but they still refused to prescribe a sedative. We had to give it a go, but I had warned them. It was horrific, and altogether 4 doctors and 3 nurses tried and failed to take blood with a very distressed and angry young man. They now not only sedate him, but they send staff to our house to take blood to reduce his stress. All that stress just because someone didn’t read the notes. It costs the NHS more to do what they should have done in the first place just to get the same result.”

 “Faced with a gastrostomy-fed child who was vomiting practically every feed, losing weight and looking very ill, I wanted to feed him “real” food. This was based on a great deal of research, and the paediatrician saw no medical reason not to try. Within 4 days, the vomiting had stopped. However, the Dietician’s Team refused to work with me for nearly a decade on the issue of real food being given to him. The words “mother going against medical advice” were written over my son’s notes in spite of approval from a senior paediatrician and subsequently a gastro-enterologist. Very recently, a new trend is thankfully moving  towards a “real-food” blended diet, but only because parents have discovered that it makes a phenomenal difference to their children’s health – especially those with Severe Learning Disabilities, and have stood firm against such opposition. The British Dietician’s Association do not endorse blended diet – dieticians can be struck off for suggesting it. But they have to support patients, so must help parents who choose such a diet. I was recently at a medical conference where doctors were advocating the use of a blended diet as a real solution for the feeding difficulties seen in certain conditions. There is a real disconnect here, because only the dieticians have the knowledge to truly help and support us, and their Governing Body doesn’t allow them to help us”

 . “Diagnosis… For years, there have been issues with my son that do not sit easily within his syndrome. I have been asking, and “shouting” for help – for doctors to ask questions, to look into the cause of things such as his fatigue or eating difficulty. I am all too often fobbed off… “his blood results are normal, that should reassure you”. The fact that I as his mother, backed up by comments from carers and other family members see a child who is not remotely at his own normal seems to make no difference.”

 “We have needed a Multidisciplinary meeting for years so that everyone involved can discuss the many different and complex issues my son’s condition raises, but I have been told again and again that it will not happen because there are too many people involved to co-ordinate diaries, so they simply can’t get together. Meanwhile my son gets progressively less able to function on a daily basis.”

 “If only doctors would try a more holistic approach & look at the whole child not just a perceived symptom.”

 “My only request would be more support for my Aspie child who desperately needs Occupational Therapy to help him improve his social skills – I do my utmost but sometimes he needs more specialist help that I’m simply not qualified for. I am feeling quite rudderless at the moment and have no idea how to access OT for him.”

“The child development centre that we are dealing with are good but are really far behind as there is an increased awareness of ASD’s (which is obv a great thing!) and it means that 2 and a half years on, we are still waiting for a diagnosis and therefore in the meantime have no access to any support whatsoever.”

“One of my child’s medicines costs a fortune so they are always trying to get me to change it to an alternative that doesn’t work/blocks his tube so this is an on-going battle.”

 “Some are better at talking to my non-verbal child than others – some completely ignore him. After some operations a doctor hasn’t even bothered to come to the ward after to see him.”

 “Usually the nurses are very accommodating on the ward ,although the medicines are always given late, never when they are needed. We do all our son’s care/overnight feeds/meds but we are never given the items when we need them.”

 “Community Nursing team has generally been very good although totally out their depth when it came to overnight nappies and we have had a very frustrating experience which lasted over a year but has just been resolved by one call to one lady about to retire but this sorted the problem – just shows there are people who can make things happen if you get to find out who they are.”

“A real bug bear of mine is that for every admission to hospital I have to go through everything with a student doctor right from my pregnancy – why can’t you just read my child’s notes and ask questions if you have any!”

 “The NHS has provided a lot for our family and a lot of people criticse it which I feel is unfair – there are a lot of good things when you need them but it does take a while to navigate the system and how it works – and no one tells you about it, you have to learn as you are going which is exhausting.”

“Why is a parent who is reluctant to medicate often treated as being an obstructive, difficult parent. We have always tried to adopt an approach of using medication as a last resort and focused firstly on using behaviour strategies to deal with anxiety and behaviour difficulties. Yet we have experienced negative reactions and comments from some doctors. I am not against medication, but I don’t want to be bullied into giving my child a drug they may not need. I don’t want to work with a doctor that doesn’t understand that as a parent it is a big deal.”

 A lot of our experiences with the NHS are excellent, but the sad thing is that it really wouldn’t take very much to fix the things that go wrong, but nobody seems to be doing it.  In short, this is what we’d really like

  • NHS Staff who really listen to us – every single time, and who take seriously what we tell them.
  • NHS Staff being encouraged to work with us, to acknowledge that we have a very good understanding of our child’s condition and how it affects them, and we want to work with you, but sometimes it seems like you are reluctant to do so.
  • The NHS prioritising KINDNESS as the Number One Expectation from all their staff. If staff approach our children and families, or any patient within the NHS, from a starting point of being kind, everything else that matters is much more likely to just fall into place.
  • A recognition that some of your staff are difficult and awkward, not many, but some. They make things so much harder for our families, and they almost certainly make things harder for their own colleagues too. These people are costing the NHS money and time, and are risking patient’s well-being. There are probably a hundred different reasons why some staff are unable to work as part of a team, or show compassion or whatever, but it has to be sorted out. Again, a focussed emphasis on kindness would go a long way to sorting out this problem, and sorting it out urgently should be an absolute priority.
  • An understanding that parents like us often feel that the NHS can be like a lottery – our child’s quality of care is too often dependent on the attitude of the member of staff, or the team, to whom our child is assigned. Inconsistency of care is the one aspect that becomes very obvious as you read through the parent’s individual comments above. It shouldn’t be like this, and we’d all like to be able to trust absolutely every member of staff throughout the NHS to act in our child’s best interests. Until kindness is properly prioritised as an absolute minimum standard throughout the NHS Workforce, how can these inconsistencies be addressed and ironed out?
  • Things go wrong. We all know that, but when they do, it would be so helpful if someone within the NHS could take the lead to unravelling what’s happened and putting it right again.
  • Please talk to each other. It would make such a huge difference to joining up care and making everything easier for our children to get the very best care every single time.
  • The bureaucracy gets in the way of everything, and learning how to navigate and make services work for our families and our children is really hard, and simply not a fair way of delivering equal healthcare to all.
  • We all love the aspects of the NHS that go right for our children, but we simply don’t understand why, within the same organisation, there is such a huge variation of quality of care and attitude among staff members. It feels to many of us that there is a culture within the NHS of not wanting to address the problem, a widespread “wilful blindness” towards even acknowledging that such a problem exists. There are so many areas of excellence where all staff are visibly pulling together in the right direction. Why are the less good areas not being identified and supported towards achieving excellence too?

 

Yvonne Newbold

September 2015

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Special Needs Parents Views on the NHS
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