Frustrated with CCG delays? Here’s how to complain

Frustrated with CCG delays? Here’s how to complain

NHS Continuing Healthcare funding assessments

If you find that your Local Clinical Commissioning Group are delaying matters, then you need to be pro-active and complain. Don’t just sit back and accept it.

This is the NHS service which we are all paying for…

The general perception is that most CCGs tend to be more pro-active when it suits them, for example: if someone has been receiving NHS Continuing Healthcare Funding for a year or so, but their health needs have not been reviewed. A regular review could save the NHS thousands of pounds in unnecessary care home fees where the individual’s health needs have improved or even disappeared. That is fair enough!

But, what about those individuals going through the assessment process to obtain NHS Continuing Healthcare Funding, or are stuck in the system waiting an appeal, or seeking a retrospective claim for care fees already paid? Whilst live patient assessments tend to be prioritised over retrospective claims for deceased claimants, when you need the NHS process to work for you, there are often inordinate delays.  Sounds familiar?

We know of retrospective appeals for NHS Continuing Healthcare Funding against one particular CCG, that have been outsourced to a different provider just to deal with the appeal element only. These cases have then been transferred around the country from office to office, and then person to person, only to end up back with the same CCG where they stated 2 years earlier – with absolutely no progress having been made by the CCG in the meantime to move the matters forward. Hugely disappointing and frustrating!

This is your relative’s funding which is at stake.  They could be paying needless funds out of hard earned savings in order to fund care which should be reimbursed.

So, what can you do?

Here’s some helpful suggestions as to how to complain…

Some Do’s:

  1. Remember you are complaining, not moaning…
  2. “Strike whilst the iron is hot”. You have to take prompt action and decisive steps to make progress, even if complaining does not come naturally to you. If you leave the issue to resolve itself, unfortunately in our experience, you could be waiting a long time!
  3. You are perfectly entitled to complain if the system is failing you and your relative. Indeed, it is your ‘right’ to complain and you must do so if you want to see some progress of your claim for NHS Continuing Healthcare Funding.
  4. Do regularly chase the CCG either by telephone and/or in writing by email or letter for progress. Don’t be fobbed off!
  5. It is useful to keep a log of who you spoke to, time and date – as you may be passed from ‘pillar to post’, and department to department. A record of your attempts to contact the CCG may become useful if you have to lodge a formal complaint in due course.
  6. Diarise forward to issue frequent reminders or chasers.
  7. Be assertive. Write forcibly and with purpose, expressing your complete dissatisfaction with the way this matter is being handled and explain your frustration.
  8. It can be helpful to set out a chronology of events and your attempts to progress matters – which again, is why a log can be handy record.
  9. If you receive no response or no satisfactory response, do not be afraid to now send a formal Letter of Complaint to the CCG. Go onto the CCGs website to find details of their Complaints Department and complaints procedure.
  10. Make your Letter of Complaint concise and to the point, and do not ramble. You have to get the CCGs attention and make an impact. Set out the facts clearly and succinctly. Once you get going, you will probably find it a cathartic exercise.
  11. We suggest you copy in the Chief Executive, Chairman and Head of NHS Continuing Healthcare into your correspondence to make sure your letter receives attention at the highest level and won’t be put to one side.
  12. It is a good idea to send your Letter of Complaint by way of Recorded Delivery, so you can trace that it has been received. Allow a reasonable time (say 14 days) for the CCG to acknowledge your complaint letter.  They should give you a timescale by which they will respond to you formally.
  13. Remember to keep a copy of your letter – just in case you need to send a reminder chasing a response, or need it to resume battle…
  14. We suggest you write to the CCG acknowledging receipt of their holding letter and that you intend to keep them to their own proposed timescales for responding to your complaint. If, however, no timescale is provided, insist on one – otherwise, your complaint may end up taking as long as the subject of your complaint!
  15. If there are insufficient Nurse Assessors available to review the records, then suggest the CCG re-allocates its budget to provide more resources to move these cases through the ‘pipeline’.
  16. For retrospective claims, you can remind the CCG that the longer they delay in processing their review of the matter (and any appeal), the more interest is racking up on any monies found due for repayment – at the taxpayer’s expense!
  17. You may also want to get your local MP involved to add weight to your complaint if the CCGs conduct is really appalling or the delay is totally inexcusable. Unfortunately, most MPs have very little experience in this particular field, and so it would be a good opportunity for you to educate them as to NHS Continuing Healthcare Funding and get them to help spread the message that the system is under-resourced and that families are suffering as a result of delays.

And Some Don’ts

  1. Don’t put the matter off and pretend the delay doesn’t exist, or think that the situation will somehow improve on its own if you ignore it. It won’t!
  2. Don’t be fobbed off and keep persevering! The fact that the NHS are delaying matters or are woefully behind due to a lack of resources, is not your problem.  You just want fairness and justice for your relative, and for the CCG to respond quickly. So press for action, and timescales for the matter to be actioned.
  3. Don’t be hysterical, get emotional or rant in your Letter of Complaint. Although the CCG’s may be slow in processing claims, their staff still deserve your respect too and are only trying to do a job to the best of their ability with the resources available.
  4. Don’t be rude or be unnecessarily aggressive in the tone of your letter – it won’t necessarily help your cause. “Firm but fair” is the motto here.
  5. ‘Shouting’ or using lots of exclamation marks in your Letter of Complaint won’t help your case get to the top of the pile. On the contrary, whilst it might work for some, it can often have the reverse effect – so take care to moderate your language. Quite understandably, most CCG’s do not respond to being bullied into action or threatened – however frustrated you may feel by the way the NHS CHC Funding system works.
  6. Don’t be surprised though if you have to chase a response to your Letter of Complaint as well!
  7. Don’t be fobbed off with a holding letter of ‘acknowledgement’ to your complaint – which gives no positive steps as to the proposed course of action the CCG are going to take to investigate your complaint, or timescales for doing so. You have to push for a formal reply and time-frame as to when your claim will be actioned. To say that, “the matter is in a queue awaiting allocation and we can’t tell you how long this will take…” is simply not good enough. Go back and ask:
    • How long is the queue?
    • Where is the case in the queue?
    • What steps are being taken to move it up the queue?
    • What is the timescale for it to be reviewed?
    • Is it usual for a case of this nature to take xxx months/years, and what is being done to move it forward more quickly?

    The CCGs response, if unsatisfactory, will formulate your next response…

  8. Most importantly… don’t give up!


  1. Stuart Thorpe 9 months ago

    I sent a freedom of information request and found out that 95% of cases failed to gain CHC . In our case the panel chair person advised that they could not understand why the case was referred to them as our case was proven and that they would refer it back to the previous panel. The entire process took from 2011 to 2018 before part of this was settled and the CCG only paid out interest based on RPI rather than 8% . We had to involve a solicitor to get this far and we paid there fees only to request the CCG to pay them because the case was exceptional given that 95% of cases fail. The case is still proceeding nearly 8 years after my mothers death.

  2. Jenny 12 months ago

    Just a quick update. I eventually won a retrospective finding of eligibility for most of the 3 years I’d claimed on behalf of my relative. The retrospective process ran parallel to a “Complaints procedure” the CSU decided to add in for fun. The “Complaints” included whether there was any known or published retrospective policy and if so were the staff following it? and why were the staff conflating the Retrospective process with an Appeals process? I also “complained” about the lack of rules of evidence and other specific legal points – which they referred to a nurse and not a lawyer. You might wonder whether these are complaints, or issues of maladministration which they could have addressed swiftly and internally with competent leadership.
    After many months they decided it was maladministration and “Lessons would be learned”.
    I accepted the period of eligibility, waived the very arguable period they did not find (Value £30,000+), as I was both exhausted and frustrated, and requested they meet a small percentage of my time, distress, postage costs and minimal invoiced legal costs (£3,500) expended in navigating their unpublished retrospective procedure. The NHS Refreshed Redress Guidance permits this. They made an offer which didn’t cover these much mitigated outgoings, and so I eventually began an action for Restitution. Before I did that I wrote many letters explaining what Restitution is, and inviting them to consult lawyers and negotiate. They declined to engage and now appear to be squabbling with their client CCG – who belatedly want to defend the action.
    Lessons have not been learned.
    I’ll keep you posted.

  3. Peter Maxwell 12 months ago

    Whilst one sees a sparsity of posts here I post this missif on the basis that it may help someone! Most people who start along the CHC track assume that the local CCG will play by the rules from the outset . Any individual will have zero knowledge how the “assessment” system works. Therefore I make a few brief points.

    Buy a big diary and track all phone calls, emails and letters.
    Where possible send all communications by recorded delivery letter
    Check date RD letters received and who signed for it
    Avoid phone calls as much as possible as what you say is not what they hear. IF you have made a phone call send an email summerising that phone call.
    Keep electronic file of all emails
    The aim of the CCG is to frustrate , delay and grind you down it is not the aim of the CCG to provide funding
    Stick to the process for making complaints
    Even if your relative qualifies by the DST beware the bear trap of PRIMARY HEALTH CARE NEEDS as the CCG will use that to escape their liability. Be an expert of COMPLEXITY, BEHAVIOR AND NEEDS which are the subsets of PRIMARY HEALTH CARE NEEDS.
    send A FREEDOM OF INFORMATION request to your CCG asking for their rejection rates of CHC applications.Most that i did showed an 80% rejection.!!!
    Finally the CCG are their to obstruct payment not facilitate it regardless of the merits of a case

  4. Meggie 2 years ago

    When I read of people’s experiences on this site they often echo or mirror my own. I shouldn’t be surprised or shocked anymore but somehow I still am. The similarities in people’s experiences when dealing with hospitals, social services or CCGs tells us clearly that the failings are built into the system and that normal policy and practice within these organisations ensures that the system does not work as it should for the vest majority of elderly people. If it worked vast numbers of people currently paying for their own care or funded by social services would be funded by the NHS and that is what the policies and practices have been set up to avoid.
    My father was denied first the checklist, then, much later, the full assessment the Checklist indicated. Later still after another checklist we were finally at the point of agreeing a date for the MDT assessment but Dad’s health had deteriorated so much he had to go back into hospital. After another fight(because that is what it takes) he was Fast Tracked for CHC. Even then the CCG was so inefficient that it failed to pay for the care agreed and we were forced to fight for a refund of these care costs after my father’s death.
    Now following a complaint to the Ombudsman about our experiences I realise that even at this level “the system” works against you. My detailed complaint included examples of clear maladministration of the CHC process. The complaint was not about an eligibility decision (none was ever made as a MDT assessment and DST never took place) and yet the Ombudsman insist they will not investigate and have closed my complaint. They tell me they cannot/will not investigate the maladministration unless I go through the retrospective assessment process with the CCG, followed by the IRP and appeal to NHS England. As I know from the experiences of others on this site I can expect further maladministration of the process and perhaps years of stress and delay. The Ombudsman have not denied that the process could take years but all they tell me is that once the process is complete I can, if I don’t like the decision/outcome, write to them again and make another complaint. It feels like blackmail and a way of reducing the number of CHC complaints the Ombudsman has to make a judgement on. My complaint is about maladministration not eligibility and yet the Ombudsman will do nothing and the gross failings of two hospitals, a local authority and a CCG will not be investigated. The Ombudsman was my final hope as I am not in a position to take any form of legal action. I have spoken to a law firm with expertise in CHC but they will not help as there are no care home fees to reclaim (and for them to take a percentage of). They dismissed my protestations that our financial loss was just as real (not care home fees paid but loss of earnings because we cared for Dad ourselves).. This apparently doesn’t fit their model of helping reclaim care home fees so they declined to help.
    I have tried my MP (a waste of time) so there is quite simply nowhere else to go. “They” have won. “They” have got away with it. “They” , the tax payer funded public bodies and individuals cannot be held to account by anyone.

    • Jenny 2 years ago

      Have you considered an action for the civil remedy of restitution, or for Judicial Review if there is clear maladministration? Are there firms you could approach to advise or assist you by either of these routes?

  5. Jenny 2 years ago

    Thanks. Reading this article is both infuriating and reassuringly familiar in equal measure. I recognise all the tactics and strategies of delay, and have run through the list of Do’s from start to finish. It’s almost as if the CCGs have got together concocted a strategy! Alternatively, the really lazy and inept ones decide to outsource the work to CSUs whose websites proudly boast of their success in handling CHC matters. What’s important to recognise is that success for pitching for this work is measured by fobbing off, or wearing out those who dare to apply for CHC assessments, or by delaying appeals, or by making their processes so unintelligible that people either give up, or commit themselves to years of argument and lawyer’s bills. All of this saves the CCG money, and boosts the egos of the thousands of people employed by CSUs throughout the country.
    I am pursuing a retrospective on behalf of a relative for whom we achieved CHC during lifetime. It took me several years to achieve an assessment, and so there are years before the eligibility when relative was clearly very unwell both physically and mentally, yet remained unassessed. The CCG and CSU at the time behaved with indifference, and perceived themselves as unaccountable throughout that time. The CSU subsequently appointed by the CCG is no better. I’m seeing the same lack of communication, rule changing and lack of professionalism in handling a retrospective claim for the deceased patient, as I experienced for the live one. They simply don’t care, and in the absence of any better strategy, and in the face of huge quantities of evidence supporting Severe scores in many domains, they just go silent. Woeful.
    I cannot imagine there are too many organisations where this low level of customer care and professionalism is considered acceptable., and yet we are paying their salaries.

    • Care to be Different 2 years ago

      Hi Jenny – sadly we hear these experiences from families all too often. Don’t struggle alone – if you would like to consider engaging some support with the case please do get in touch. Kind regards

  6. Christine Forrest 2 years ago

    We have been awaiting the decision of an appeal for a DST meeting held exactly 2 years ago for our 92 year old mother who was (is) residing in a specialist EMI nursing unit with dementia. However, our mother went into End of Life Care in March this year and received Fast Track Funding accordingly. I have now heard from the CCG regarding our appeal. Is this approach from them likely to be an excuse to review the current funding as well as finally meet their obligations to an appeal decision?

    • Care to be Different 2 years ago

      Hi Christine – I don’t think it is but if the appeal decision is negative it is worth considering engaging some professional support at that stage to look at the prospects of appealing to NHS England. Regards

  7. Judy 2 years ago

    It’s a revolving door. Complaint to CCG about outsourcer. Complaint sent to Director of outsourcer for another office to look into..Meeting and report completed and sent to office of outsourcer who continually send emails providing a new date by which you will get the report./feedback . Now back with the CCG to whom the original complaint about the outsourcer was made. Different person now at CCG who hasn’t got to grips as to what the complaint was about in the first place.

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