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Serious failure of service? S.A.L.T.

Daddy of Two

Sorry about the verbage, I need to have a little rant:

Previously I posted in this thread

community.autism.org.uk/.../possible-aspergers-waiting-diagnosis

Our son has essentially been waiting for nearly 18 months to get an appoiuntment to be seen. We are on the waiting list to be put on a waiting list.

The issue is that our area had no S.A.L.T. to we could not be given an appointment for an A.S.D. assesment.

We were assured ons everal occasions that funding was now available and a S.A.L.T. would be appointed in January. THis came and went, and now we are in May and still nothing.

However, it transpires that one was appointed, and assesments were proceeding as of January this year.

However,  I was informed that the referrals team are unable to make an appointment for my Son, as he was 'outside the cutoff' , and they were not allowed to make appointments for anyone referred prior to January 1st 2015. My son's referral was eventually accepted in October 2014 (having previously been rejected by the referrals team in March last year - on the basis that  his problems were 'mainly behavoural' - this is despite the fact that no evidence gathering had been performed, so the only information they had to go on was a referral letter by our GP!).

Obviously this was shocking, and the staff were upset that they had been told not to refer people too. I was given the number of our area's head of universal speech and language therapy, and eventually got an explanation from her.

Apparently, they fund S.A.L.T. through 'funding pathways' - comissioned by the Clinical Comissioning Group.  A 'Pathway' had finished in March 2014, and after that, there was no S.A.L.T. provision at all in our area. The waiting list now stands at over 300 children waiting for an appointment.

However, the C.C.G. released a new funding pathway  late last year, but it was decided NOT to allow anyone referred prior to December 2014 into this list, as it would 'create a perpetual backlog'.
In essence, people being referred today will be seen significantly before people referred last mach onwards!

The light at the end of the tunnel was that a separate 'pathway' was agreed, and they are now in the process of setting this up. We are talking about months rather than days, - and I was told that we could be looking at another 18 months before my Son gets seen.

Now, I understand that A.S.D. assesments take a long time, and waits of a year are not unusual. However, given we went to our GP in december 2013 to get a referral, and we are no further along than we were then, and have had to jump through hoops to satisfy an innefective NHS team, I cannot see how this is remotely fair!

We can't get an out of area referral as the head of S.A.L.T told me that the C.C.G. would reject the funding request as they have just agreed to fund this fresh pathway.

We also cannot get our son re-referred by our G.P. to get him into this 'pathway' as he is already known to the referral team!

We cannot afford private assesment, and have been advised by the NAS helpline that this is not their reccomended path as many authorities do not recognise these diagnosis.

All we can do now is wait. Our son is 6, and will be 8 before he has any hope of being seen. We need to be thinking about secondary school by the time he's in year 4, and a diganiosis  is essential with this!

We have now drafted a letter, with the support of our Son's school, to complain to the local PALS team. As you can tell by my wordy rant that I am furious at the mishandling of this, and the other detail is that we have had no communication from the NHS over the status of our Son's referal at all. All this information is gleaned from our own investigations and enquiries! Our GP has been about as useful as a chocolate teapot, having lost the referral once, and then sitting on it for 6 weeks the second time!

Does anyone else have a similar experience or have any advice?

Parents

  • Apologies firstly as this post is now some months on from your original posting and hopefully you may have had some progress.  Commissioning of CCG pathways is not your problem, it is the CCG and local authority's problem...you are being fobbed off.  However, if you haven't made progress, I would suggest the following:

    1. You should submit a complaint to the Chief Executive of the parent NHS Trust that provides the SALT service, and in particular state that you consider that the delay is neglect/a safeguarding issue, that you intent to write to the CQC about that Trust, and that it will be your intention to write to the Parliamentary and Health Service Ombudsman in the absence of a prompt resolution to your complaint (mention the Winterbourne Scandal report).  You could alternatively complain to the CCG but are more likely to get a 'we have to manage our limited funds' response, which is inappropriate.

    2. You or your school need to submit to your local authority for an EHC assessment. This assessment should include a SLT assessment for the purposes of education/communication.  If the LA-commissioned SALT provider cannot provide an assessment within the statutory six week time period, the LA should pay for this seperately. You should make it clear that if the LA does not agree for an EHC plan at the end of the assessment process, you will submit to a SEND Tribunal.

    3.  You should contact your local MP and request that he writes on your behalf.

    4.  You need to keep a file, maintain minutes of every meeting, including at school, avoid informal conversations and instead email interact and keep all emails.

    5.  You should request your GP to refer to your local paediatric neurorehab consultant.  Medical appointments are subject to national pathway targets whereas speech therapists/allied healthcare professionals are not.

    6.  You could also consider writing to your local Children's Safeguarding Board, again flagging up 'neglect'.

    7.  If any service manager writing to you is a registered SALT professional, you could submit a complaint about them (for lack of service planning and safeguarding) to their national registrations body Health and Care Professions Council.  That will certainly cause them to focus irrespective of outcome of complaint.

    8.  Finally, if it is SALT opinion for the purpose of communication/education, remember it is a local authority not an NHS problem, and they should be paying for this specifically for your child if their local contracted NHS provider is not in a position to provide.  The school SENCO should be looking to facilitate this through the local authority inclusion officer.

    9.  We have found seeking a payed for private/independent opinion very useful and a jumping board to proceed further...it is worth the money.  Ensure any private SALT has stated relevant expertise for autism and also is familiar with submitting to a SEND Tribunal.

    In any of these interactions, you should flag up how your child is struggling from a communication (i.e., educational and ultimately the responsibility of the LA) and mental health point of view.  Include any behavioural dificulties and bullying issues, all building a safeguarding case.  Safeguarding is the one issue that makes local authority and NHS personnel stop and think...

    Also your Smartphone video clips of your child...very useful and easily produced in meetings and kept on file just in case, when you have somebody not actingprimarily on behalf of your child (as is the their statutory responsibility/duty of care as a public service employee).

    Apologies if this comes across as intense, SALT provision is the current bee in my bonnet.  I am a hardened SEND Tribunal veteran.  I am also a senior clinical manager in the NHS in neuroscience so have insight how it works.  Best of luck.

Reply

  • Apologies firstly as this post is now some months on from your original posting and hopefully you may have had some progress.  Commissioning of CCG pathways is not your problem, it is the CCG and local authority's problem...you are being fobbed off.  However, if you haven't made progress, I would suggest the following:

    1. You should submit a complaint to the Chief Executive of the parent NHS Trust that provides the SALT service, and in particular state that you consider that the delay is neglect/a safeguarding issue, that you intent to write to the CQC about that Trust, and that it will be your intention to write to the Parliamentary and Health Service Ombudsman in the absence of a prompt resolution to your complaint (mention the Winterbourne Scandal report).  You could alternatively complain to the CCG but are more likely to get a 'we have to manage our limited funds' response, which is inappropriate.

    2. You or your school need to submit to your local authority for an EHC assessment. This assessment should include a SLT assessment for the purposes of education/communication.  If the LA-commissioned SALT provider cannot provide an assessment within the statutory six week time period, the LA should pay for this seperately. You should make it clear that if the LA does not agree for an EHC plan at the end of the assessment process, you will submit to a SEND Tribunal.

    3.  You should contact your local MP and request that he writes on your behalf.

    4.  You need to keep a file, maintain minutes of every meeting, including at school, avoid informal conversations and instead email interact and keep all emails.

    5.  You should request your GP to refer to your local paediatric neurorehab consultant.  Medical appointments are subject to national pathway targets whereas speech therapists/allied healthcare professionals are not.

    6.  You could also consider writing to your local Children's Safeguarding Board, again flagging up 'neglect'.

    7.  If any service manager writing to you is a registered SALT professional, you could submit a complaint about them (for lack of service planning and safeguarding) to their national registrations body Health and Care Professions Council.  That will certainly cause them to focus irrespective of outcome of complaint.

    8.  Finally, if it is SALT opinion for the purpose of communication/education, remember it is a local authority not an NHS problem, and they should be paying for this specifically for your child if their local contracted NHS provider is not in a position to provide.  The school SENCO should be looking to facilitate this through the local authority inclusion officer.

    9.  We have found seeking a payed for private/independent opinion very useful and a jumping board to proceed further...it is worth the money.  Ensure any private SALT has stated relevant expertise for autism and also is familiar with submitting to a SEND Tribunal.

    In any of these interactions, you should flag up how your child is struggling from a communication (i.e., educational and ultimately the responsibility of the LA) and mental health point of view.  Include any behavioural dificulties and bullying issues, all building a safeguarding case.  Safeguarding is the one issue that makes local authority and NHS personnel stop and think...

    Also your Smartphone video clips of your child...very useful and easily produced in meetings and kept on file just in case, when you have somebody not actingprimarily on behalf of your child (as is the their statutory responsibility/duty of care as a public service employee).

    Apologies if this comes across as intense, SALT provision is the current bee in my bonnet.  I am a hardened SEND Tribunal veteran.  I am also a senior clinical manager in the NHS in neuroscience so have insight how it works.  Best of luck.

Children
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