The importance of the NHS complaints process in allowing people to speak up

The NHS cannot always fund medication, operations or other care that is not routinely paid for by NHS England. This might be because of lack of evidence that the treatment will work or if they consider there will be little health gain.

However, the NHS will consider paying for a treatment that is not normally funded: if the person’s situation is very different from anyone else with the same, or similar, condition; or they consider the condition to be very rare. The person’s doctor can make an application to the local Clinical Commissioning Group (CCG). This is called an Exceptional (or Individual) Funding Request.

Here we meet Melanie who contacted The Advocacy People when her local CCG did not agree to her Exceptional Funding Request. Melanie and two of the doctors involved in her treatment had requested funding for a specific treatment for hirsutism that was causing ongoing mental health difficulties for Melanie. Her self-esteem and confidence were severely affected, and she felt unable to live her life to the full.

Hirsutism is the medical name given to what is considered excessive hair growth on women; thick or dark hair on the female body in what is considered a ‘male’ pattern, including the face, chest, stomach, back and thighs. Societal and cultural norms place enormous pressures on women to remove such ‘abnormal’ growth and being unable to remove it can lead women to experience severe depression and anxiety. For Melanie, this posed a difficult question. She recognised the external, discriminatory, influences that hold men to a different standard than women, but she also acknowledged the severe impact this was having on her mental health. After much careful consideration, and with ‘over the counter’ options ineffective, Melanie sought medical help to treat the actual cause of the condition.

Our Independent Health Complaints Advocate supported Melanie to challenge the CCG’s decision to refuse the funding for treatment and, more generally, the unfairness of the policy, which she felt, unintentionally discriminated against women in deeming it a purely “cosmetic” issue, trivialising the impact it has on patients’ wellbeing. Our advocate was able to help her work through this to identify the reasons she was making these challenges and put them forward in a clear letter. The advocate provided support to Melanie, through what was at times, a draining and discouraging process.

Unfortunately, the challenge, and a subsequent appeal to the Parliamentary and Health Service Ombudsman, were not successful in changing either the individual funding decision or the policy. However, the CCG did take time to review and reflect on the Equality Impact Assessment for this funding policy to ensure it had considered and acted upon any potential discrimination.

After receiving the final decision from the Ombudsman, Melanie wrote to her advocate to express her gratitude for the advocacy support she received and to highlight the importance of the NHS complaints process. She said,

“We didn’t get all we asked for, but it was not about that. It was about standing up and speaking out for myself and others. To be taken seriously… advocates can be as much healers as doctors and psychologists.

Through the experiences [of family members being very unwell] and my own therapy, I truly know the wonderful care and treatment the NHS provides. When you can see the value in something and you really care about it, you want it to be all that it could be, and so it became about trying to ensure the CCG could do all that it could for patients.”