Please note: We now refer to ‘National Specialist’ funding as ‘Funding through the local Health Board/ICB’ across all of our resources. These two terms refer to the exact same funding route and some services may still refer this pathway as ‘National Specialist’.
Local Health Boards/ICBs will make the decision for specialist funding on a case by case basis, as opposed to NHS England/HSS Funding which requires specific criteria to be met. The most common reason the local Health Board may give for refusing funding is if you haven’t ‘exhausted local provision’, meaning you haven’t tried everything available to you locally. What this means is that, in most cases, you will need to access CBT with ERP through your local CMHT first in order to show that more specialist CBT is necessary. It does not mean you have to try medication.
You can ask to see the referral and funding request before they are sent off so that anything that doesn’t best represent your situation can be changed.
Professionals might be reluctant to make a referral because they worry it reflects badly on their team because they were not able to help. It can be helpful to show them some information to back up why you think you need this referral. Some documents that you can show your consultant are:
- The NICE guidelines – this document holds a lot of weight, because these guidelines are nationally recognised and professionals must be able to give a reason for going against them. The NICE guidelines specifically outline the stepped care model, and tertiary/specialist treatment is at the top, so it can help to refer to this stepped-care system and how people should be ‘stepped-up’ along it. If the consultant disagrees and doesn’t feel you should be be referred on for specialist treatment, they have to be able to explain why in writing, if asked.
. - Your full case history, including previous treatment, why previous treatment might have failed, and any documents that show your symptoms have been resistant to treatment so far (also called ‘treatment refractory’).
. - A personal statement from you and/or your carer/s about how your symptoms impact your daily life (self care, activities, employment, education, relationships…) and mental health. OCD Action have a template letter than can be used for this and/or to request the referral.
. - Information about the service you want a referral to and why this is different from local options. This can be their specialisation, which the NICE guidelines can provide some helpful quotes for, or data on how often the service is successful, which you can find on their website.
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Trying again
Most people do have to push for this type of funding, so it’s to be expected to get some push-back or to have to fight for it. It is important not to give up, and there are a number of things you can try if you haven’t been successful.
- It can be helpful to ask them to explain, in writing, their reasons for refusing. This gives you the chance to respond to their concerns or provide more information towards why it is necessary. It also means that they won’t be able to claim to have different reasons later if challenged.
. - Another option is to get assessed by an OCD/BDD specialist, and then use the assessment report as proof of needing specialist treatment. This can be paid for privately, or you can ask to be referred to a specialist treatment centre just for an assessment as it will cost the local area less – this is already included in the template letter linked above.
. - A second opinion can also be requested, either from the specialist service itself (which funding would still need to be approved for) or from the local area. The Medical Director and Head of Psychology at the local Foundation Trust are two locally available roles that can provide a strong second opinion.
. - If you are looking for a referral to the specialist services at the Maudsley hospital (CADAT or the Michael Rutter centre – see appendices), the service itself might be able to make the funding request for you. This depends on your local area, so you can email the service to ask what the policy is for your area. If the service usually does the request for your area, then you can inform your consultant that all they need to do is send through a referral form to the hospital. This will be much more difficult to say ‘no’ to.
Your local Health Board/ICB should always give a written explanation for this, which can then be used to make any changes or additions to the request. The request can be sent through again as long as there has been a ‘material change in circumstances’, which includes adding more evidence and information to it.
There are also a number of people or organisations that can support you through this process or if you come across any obstacles that shouldn’t be there:
- If the Health Board’s decision or actions seem to be against their funding protocol or criteria, the rejection can be appealed to the Independent Funding Appeal Panel. Different local areas each have their own set of protocols, and you can ask to see the ones for yours.
. - Although the reason for the decision should be sent through in writing, if you or your consultant have any other questions or want more detail, you can call or write to the decision makers directly to find out more about why.
. - If the rejection seems to be because the information was not presented to the board well enough, a complaint can be made directly or through the Patient Advice and Liaison Service (PALS, though might go by a different name in your area), which can offer mediation with the health professional.
. - In some cases, when things just don’t seem to be moving along as they should, contacting the local Assembly Member or Member of Parliament can be helpful.